Mental Help Net - Self-Help Sourcebook OnLine

"Although the world
is full of suffering...
it is also full of
overcoming it."
-- Helen Keller

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Shaken Baby Alliance http://www.shakenbaby.com Promotes public awareness and education, victim and family support, and victim advocacy. Offers networking and literature. Provides assistance in starting groups. Provides case consultation services to professionals involved in diagnosing, investigating, and prosecuting physical child abuse. Online listserv.
The ALMA Society (Adoptees' Liberty Movement Association) http://almasociety.org Provides moral support and guidance for adopted children in finding their birth parents and/or siblings. Also helps parents find the children they gave up for adoption. Open to foster children (age 18+). International reunion registry. $50 one-time tax-deductible contribution.
National Family Caregivers Association http://www.thefamilycaregiver.org Dedicated to improving the quality of life for family caregivers through support and validation, education, information, public awareness and advocacy. Information and referrals, quarterly newsletter, resources and literature.
ElderCare Rights Alliance http://www.eldercarerights.org Promotes the principles of justice and dignity in the long-term care system through education, advocacy and action. Individual advocacy and advocacy training, crime victim support, family caregiver training, nursing home Resident and Family Action Councils education.
LifeRing Secular Recovery http://www.unhooked.com Secular community of persons who are building lives free of dependency on alcohol and other drugs. Group activities are not associated with religion or spirituality. Members practice complete abstinence from alcohol and other addicting drugs. Peer support, literature, information and referrals, and advocacy activities. Online email support group and several special interest groups (women, weight loss, stop smoking, etc). Online chats and forum. Publishes sobriety literature.
Families Anonymous http://www.FamiliesAnonymous.org 12-step fellowship for relatives and friends of persons with drug, alcohol or behavioral problems. Members learn to achieve their own serenity in spite of the turmoil which surrounds them. Besides many booklets, pamphlets and bookmarks, publications include daily thought book, "Today a Better Way", and a bi-monthly newsletter, "The 12-Step Rag". Offers group development guidelines.
Alcoholics Anonymous World Services, Inc. http://www.aa.org 12-Step fellowship of men and women who have found a solution to their drinking problem. The only requirement for membership is a desire to stop drinking. Supported by voluntary contributions of its members and groups, A.A. neither seeks nor accepts outside funding. Members observe personal anonymity at the public level, thus emphasizing A.A. principles rather than personalities. For more information check your local phone directory.
Alateen http://www.al-anon.alateen.org 12-Step fellowship of young persons whose lives have been affected by someone else's drinking. An active adult member of Al-Anon who is certified as eligible to serve by the Al-Anon area serves as a sponsor for each group. Group developmental guidelines and newsletter. Literature is available in over 30 languages.
Al-Anon Family Groups, Inc. http://www.al-anon.alateen.org 12-Step fellowship of men, women, children and adult children whose lives have been affected by the drinking of a family member or friend. Opportunity for personal recovery and growth. Guidelines for starting groups. Literature available in over 34 languages.
Adult Children of Alcoholics World Services Organization, Inc. http://adultchildren.org Program of recovery for individuals who were raised in an alcoholic or otherwise dysfunctional household. Group development guidelines, newsletter and literature. Send a self-addressed stamped envelope when writing.
Calix Society http://www.calixsociety.org 12-step fellowship of Catholic alcoholics maintaining their sobriety through Alcoholics Anonymous. Concerned with total abstinence, spiritual development and sanctification of the whole personality of each member. Bimonthly newsletter. Assistance in chapter development.
Overcomers Outreach, Inc. http://www.overcomersoutreach.org Christ-centered 12-step support group for persons with anyone affected by addictions, as well as their families and friends. Uses the 12-steps of A.A. and applies them to the Scriptures. Uses Jesus Christ as "higher power." Supplements involvement in other 12-step groups. Newsletter, group development guidelines and conferences.
Psychologists Helping Psychologists Mutual support for doctoral-level psychologists or students who've had a personal experience with alcohol or drugs. Aim is to support each other in recovery and help others to recover. Aim is to educate psychology community. Regional/national get-togethers, newsletter.
Secular Organizations for Sobriety (Save Ourselves) http://www.cfiwest.org/sos/ Mutual help for alcoholics and addicts who want to acknowledge their addiction and maintain sobriety as a separate issue from religion or spirituality. Newsletter. Guidelines and assistance available for starting groups. Real-time online chats and e-groups available.
Women For Sobriety http://www.womenforsobriety.org Program designed specifically to help chemically addicted women achieve sobriety. Addresses the need to overcome depression and guilt. Monthly newsletter, information and referrals, phone support, group meetings, conferences and group development guidelines.
Social Workers Helping Social Workers http://www.socialworkershelping.org Supports recovery from alcohol or other chemical dependence, either their own or that of a significant other, among social workers (BSW/MSW) or BSW/MSW students. Social workers with other addictions are welcome to attend meetings. Newsletter, annual conferences, some regional retreats/meetings, continuing education, daily e-mail digest and group development guidelines.
Anesthetists in Recovery http://health.groups.yahoo.com/group/airforsobriety Network of recovering nurse anesthetists. Provides phone support, information and referrals to groups and treatment.
Brain Aneurysm Foundation http://www.bafound.org/ Provides information on local groups. Uses "Brain Talk" message boards. Members can volunteer to be listed and network with other members. Has small section for members to post their stories.
CleftAdvocate http://www.cleftadvocate.org Resource for educational materials, cleft/craniofacial team information, emotional support and more. Local and regional family networking for parents, kids, teens and adults. cleftAdvocate hosts the North American Craniofacial Family Conference for individuals and families dealing with all craniofacial conditions, including acquired facial differences (trauma, illness and disease).
International Lawyers in Alcoholics Anonymous http://www.ILAA.org Serves as a clearinghouse for support groups for lawyers who are recovering alcoholics or have other chemical dependencies. Newsletter, annual conventions and group development guidelines.
Intercongregational Addictions Program (ICAP) Network of recovering alcoholic women in religious orders. Helps Roman Catholic women who are, or have been, members of religious orders and are alcoholic, or chemically dependent, compulsive eaters, compulsive gamblers, etc. Information, referrals, assistance in meeting other members, phone support, conferences and e-mail support.
Chemically Dependent Anonymous http://www.cdaweb.org Purpose is to carry the message of recovery to the chemically dependent person. For those with a desire to abstain from drugs/alcohol. Information and referrals, phone support, conferences. Group development guidelines.
Overcomers In Christ http://www.OvercomersInChrist.org Recovery program that deals with every aspect of addiction and dysfunction (spiritual, physical, mental, emotional and social). Uses Overcomers goals which are Christ-centered. Resources, information and referrals. Assistance in starting new groups. Literature.
International Doctors in Alcoholics Anonymous http://www.idaa.org Opportunity for doctoral level health care professionals to discuss common problems and find common solutions to drug and alcohol problems. Annual meetings (1st week in Aug.), phone support, information and referrals.Mutual help meetings at conferences of other organizations. Also, Al-Anon program of helping families and friends of alcoholics recover from the effects of living with the problem drinking of a relative or friend. In addition, website provides links to several listgroups (ongoing recovery-related meetings conducted by email).
JACS (Jewish Alcoholics, Chemically Dependent Persons and Significant Others) http://www.jacsweb.org For alcoholic and chemically dependent Jews, families, friends, associates, and the community. Networking, community outreach, retreats, newsletter, literature, spiritual events and speakers bureau.
Moderation Management http://www.moderation.org Behavioral change program and support network for people concerned about their drinking. Group support, education and behavioral change techniques empower individuals to choose and maintain an individual path of change, whether moderation or abstinence. Promotes early self-recognition of risky drinking behavior when moderation is a more easily achievable goal. Face-to-face groups, online listservs, online meetings, chatroom topic meetings and moderation-friendly therapist listings.
SMART Recovery (Self-Management And Recovery Training) http://www.smartrecovery.org Network of self-help groups for individuals wanting to gain their independence from addictive and compulsive behaviors. SMART Recovery is an abstinence program based on cognitive-behavioral principles, especially those of rational-emotive behavior therapy. Newsletter, information and referrals, literature and assistance in starting local groups.
Men for Sobriety Purpose is to help all men recover from chemical addiction through the discovery of self, gained by sharing experiences, hopes and encouragement with other men in similar circumstances. Recognizes men's complex role in today's society.
Alcoholics Victorious http://alcoholicsvictorious.org Christian-oriented 12-step support group for those recovering from alcohol or chemical dependency. Information and referrals, literature, phone support, conferences, support group meetings, newsletter. Assistance in starting groups. How-to materials.
Free-N-One Recovery http://www.freenone.org Support group that teaches people to be free mentally and spiritually, as well as free from drugs and alcohol. Family support groups available. Information and referrals, phone support, literature, conferences. Assistance in starting local chapters.
Dual Recovery Anonymous http://www.draonline.org (Note: listings of groups on this website may be out-of-date - be sure to call the contact nymber listed for the group before attending) A self-help program for individuals who experience a dual disorder of chemical dependency and a psychiatric or emotional illness. Based on the principles of the 12-steps and the personal experiences of individuals in dual recovery. Literature, newsletter, assistance in starting local groups.
Double Trouble in Recovery, Inc. http://www.doubletroubleinrecovery.org Fellowship of men and women who share their experience, strength and hope with each other so that they may solve their common problems and help others to recover from their particular addiction(s) and mental disorders. For persons dually-diagnosed with an addiction as well as a mental disorder. Assistance in starting new groups. How-to for starting groups is printable from online. More detailed How-to Start guide, Basic Guide Book, and other literature available. Local conferences.
Dual Disorders Anonymous http://groups.msnusers.com/dualdisordersanonymous 12-step fellowship of men and women who come together to help those members who suffer from both a mental disorder and alcoholism and/or drug addiction. Group development guidelines.
National Amputation Foundation, Inc. http://www.nationalamputation.org Offers support, referrals and information to all amputees. "Amp to Amp" program links individuals with others with similar amputations. Donated medical equipment program, given away to any person in need. Items must be pick up at the office. Dues $25/year. Newsletter, library of information, information and referrals. Local donated medical equipment give-away program to persons in need. Dues $25/year.
Amputee Coalition of America http://www.amputee-coalition.org Mission is to reach out to people with limb loss and to empower them thruogh education, support and advocacy. Maintains the National Limb Loss Information Center, which is a comprehensive source of information for people living with limb differences. Provides referrals to self-help groups and certified peer visitors. Publishes starting a support group information packet and two magazines, "inMotion" and "First Step: A Guide for Adapting to Limb Loss."
Batterers Anonymous Self-help program for men who wish to control their anger and eliminate their abusive behavior toward women. Buddy system. Group development manual ($9.95).
First Candle/SIDS Alliance http://www.firstcandle.org Provides education, advocacy, research and support for families of babies who have died from SIDS (sudden infant death syndrome), stillbirths and miscarriages. Bilingual grief counselors are available 24 hrs. Newsletter, conferences and chapter development guidelines.
UNITE, Inc. http://www.unitegriefsupport.org (local support group meetings and times available online) Support for parents grieving a miscarriage, stillbirth or infant death. Support for parents through subsequent pregnancies. Group meetings, phone help, newsletter, lending libraries, annual conference. Offers grief counselor training programs. Guidelines for starting and facilitating a group. Professionals in advisory roles.
Parents of Murdered Children, Inc. (POMC) http://www.pomc.org Nation-wide self-help support organization for family and friends of those who have died by violence. Newsletter 3 times a year. Court accompaniment also provided by many chapters. Parole Block Program and Second Opinion Service also available. Offers assistance in starting local chapters.
CLIMB, Inc. (Center for Loss In Multiple Birth) http://www.climb-support.org Support by and for parents who have experienced the death of one or more of their twins or higher multiples during pregnancy, birth, in infancy, or childhood. Newsletter, information on specialized topics, pen pals, phone and e-mail support, website for members, information for professionals.
AMEND (Aiding Mothers and Fathers Experiencing Neonatal Death) http://www.amendgroup.com Offers support and encouragement to parents having a normal grief reaction to the loss of their baby. One-to-one peer counseling with trained volunteers.
Alive Alone, Inc. http://www.alivealone.org Self-help network of parents who have lost an only child or all of their children. Provides education and publications to promote communication and healing, to assist in resolving grief, and to develop means to reinvest lives for a positive future. Bi-monthly newsletter.
Delta Society http://www.deltasociety.org Maintains a database of pet bereavement support groups, pet loss resource persons, counselors and hotlines.
National Donor Family Council http://www.donorfamily.org Bereavement support and educational resources for families of deceased organ and tissue donors. The NDFC provides free literature, educational programs and numerous ways to honor a loved one. National Donor Family Quilt, quarterly newsletter, pen pals and advocacy efforts.
Association for Macular Diseases, Inc. http://www.macula.org Support for persons suffering from macular diseases and their families. Distributes information on vision equipment. Supports national eye bank donor projects devoted solely to macular disease research. Quarterly newsletter, phone support network, participates in seminars, group development guidelines. Local support groups.
American Council of The Blind http://www.acb.org Aims to improve the well-being of all blind and visually impaired people and their families through education, support, and advocacy. National conference, information and referrals, phone support, state and special interest affiliates (e.g. guide dog users, blind lawyers, teachers and students), magazine published ten times a year (available in Braille, half speed cassette, large print, CD ROM, and online or via e-mail). Scholarships, online job bank. Chapter development guidelines.
MAB Community Services http://www.mabcommunity.org Support network for persons coping with sight loss. Sponsors support groups for elders and mixed ages. Outreach services, community volunteers, recording studio, cassettes and newsletter.
Foundation Fighting Blindness http://www.fightblindness.org Offers information and referral services for affected individuals and their families, as well as doctors and eye care professionals. Provides comprehensive information kits on retinitis pigmentosa, macular degeneration and Usher syndrome. Newsletter presents articles on coping, research updates, and Foundation news. Supports research into the causes, treatments, preventative methods and cures for the entire spectrum of retinal degenerative diseases. Newsletter "InFocus" published 3 times/yr. E-newesletter "InSight" published 5 times/yr. National conference held every year. Membership fee: $25/yr. donation.
Juvenile Diabetes Research Foundation International http://www.jdrf.org Supports and funds research to find a cure for diabetes and its activities for families affected by diabetes. Awards research grants and sponsors a variety of career development and research training programs. International conferences and workshops for researchers. Chapter development guidelines.
Blinded Veterans Association http://www.bva.org Support, information and outreach to blinded veterans, including those who were blinded in combat and those suffering from age-related macular degeneration and other eye diseases. Help in obtaining prosthetic devices and accessing the latest rehabilitation programs. Quarterly newsletter. Regional meetings.
Council of Citizens with Low Vision International http://www.cclvi.org Enourages low vision people to make full use of vision through use of equipment, technology and services. Education and advocacy. Quarterly magazine, information and referrals, group development guidelines, scholarships and conferences.
National Association for Visually Handicapped http://www.navh.org Support for visually impaired seniors. Newsletter, phone support, information and referrals. Bi-monthly support group for visually impaired adults and seniors. Guide to starting groups for elders losing sight. Free large print loan library by mail, optical library. Large print informational materials available in English and some in Russian, Spanish and Chinese.
National Federation of the Blind http://www.nfb.org Serves as both an advocacy and a public information vehicle. Contacts newly blind persons to help them with the adjustment. Provides information on services and applicable laws. Student scholarships. Assists blind persons who are victims of discrimination. Literature, monthly meetings and magazine. Assistance in starting new groups.
National Organization of Parents of Blind Children http://www.nfb.org/nopbc Support for parents of blind children. Serves as both an advocacy and public information vehicle. Provides information on services available. Offers positive philosophy and insights to blindness and practical guidance in raising a blind child. "Future Reflections" magazine, parent seminars, free parents information packet, meetings, conventions. Dues $8.
National Association For Parents of Children with Visual Impairments http://www.napvi.org Outreach and support for parents of children with visual impairments. Promotes formation of local parent support groups. Increases public awareness. Quarterly newsletter. Dues $25/family. Group development guidelines.
Vision Northwest http://www.visionnw.com Mission is to promote independent living for people affected by vision loss through individual and group support, low vision aids, information and education. Helps people with vision loss to become more independent through a network of peer support groups and individual peer counseling. Information and referral, newsletters, low vision accessory store and loan-lending optical aids network.
Lighthouse International http://www.lighthouse.org Mission is to overcome vision impairment for people of all ages through rehabilitation services, education, research and advocacy. Free literature on eye diseases (macular degeneration, glaucoma, cataracts, diabetes, and more) and various resource lists (reading options, adaptive computer technology, financial aid, etc.) Provies contact information for support groups, low-vision services, rehabilitation agencies, state agencies and advocacy groups.
The Phoenix Society for Burn Survivors, Inc. http://www.phoenix-society.org Mission is to uplift and inspire anyone affected by burns through peer support, collaboration, education, and advocacy. Some of our services include support services, referrals, our quarterly newsletter "Burn Support News", SOAR Peer Support Program, our annual World Burn Congress, family services, informational website with online chat sessions, toll-free information and referral line, advocacy, and educational programs.
Burns United Support Group Mutual support for children and adults who have survived being burned, no matter how major or minor the burn. Also for the family and friends of the survivor. Outreach visitation, newsletter, pen pals, phone support, assistance in starting groups.
Burn Survivors Online http://www.burnsurvivorsonline.com Information and support for burn survivors and their families throughout the world. Burn survivor profiles, burn statistics, peer support scheduled chats, outreach to newly burned patients and families, newsletter, list of books, articles, question and answer forum.
Men With Fibromyalgia http://www.menwithfibro.com Support, fellowship and information for men with fibromyalgia. Opportunity to learn, share, listen, offer and receive support. Spouses and loved ones welcome. Offers forum and chatroom.
Candlelighters Childhood Cancer Foundation http://www.candlelighters.org Support for parents of children and adolescents with cancer, their families, adult survivors of childhood cancer and the professionals working with them. Links parents, families and groups. Provides psychosocial support, educational resource materials and advocates on behalf of childhood cancer. Newsletter, youth newsletter, educational materials and publication list.
IMPACC (Intestinal Multiple Polyposis And Colorectal Cancer) Support network to help patients and families dealing with familial polyposis and hereditary colon cancer. Infor-mation and referrals, encourages research and educates professionals and public. Phone support network, correspondence and literature.
National Coalition for Cancer Survivorship (NCCS) http://www.canceradvocacy.org Grassroots network that works on behalf of persons with any type of cancer. Mission is to advocate for quality cancer care for all Americans by leading and strengthening the survivorship movement, empowering cancer survivors, and advocating for policy issues affecting survivors quality of life. Provides information on employment and insurance issues, referrals, and publications. Newsletter. Guidelines available to help start a similar group.
DES Action http://www.descancer.org Mutual support and education for DES-exposed women, with a special focus on DES cancer issues. Provides research advocacy and medical/legal resources.
US TOO International Prostate Cancer Education and Support Network http://www.ustoo.org Education and support provided for men and their families with fellowship, peer counseling. Timely, personalized, unbiased, and reliable information about prostate cancer. Monthly newsletter distributed through support groups and also on website.
Kidney Cancer Association http://www.kidneycancer.org Provides information about kidney cancer to patients and doctors. Sponsors research and advocates on behalf of patients. E-newletter, literature, conferences, information and referrals.
National Ovarian Cancer Coalition http://www.ovarian.org Promotes education and awareness re: ovarian cancer for patients, families, and medical community. Information and referrals, networking, conferences, literature, and phone support. Helps develop statewide divisions.
International Myeloma Foundation http://www.myeloma.org Mission is to improve the quality of life of myeloma patients while working toward prevention and a cure. Educational and supportive programs, information packets, phone support, newsletter. Networks patients together for mutual support. Referrals to self-help groups nationwide. Guideliens ofered to assist those interested in starting a group.
Mautner Project , the National Lesbian Health Organization http://www.mautnerproject.org Cancer support and survivorship groups for lesbians, bisexual, transgender women who partner with women (WPWs) their partners, and caregivers. Bereavement support groups for WPWs who have lost a partner, friend or loved one. Smoking cessation groups for the lesbian, gay, bisexual and transgender community. Health self-empowerment groups for black WPWs. Provides phone and online support to WPWs outside the DC-Metro area. Provides LGBT cultural competency training to health care professionals and their staff members. Educates the lesbian/WPW community about health issues. Information and referrals, phone support, literature, newsletter, advocacy.
SPOHNC (Support for People with Oral and Head and Neck Cancer) http://www.spohnc.org Patient-directed self-help program offering information, encouragement, support, acceptance and self-expression for persons with oral, head and neck cancer. National Survivor Volunteer Network offering one-on-one support, phone support, educational programs and publications. Assistance in starting groups. Membership dues $25(includes 8 newsletters).
FORCE (Facing Our Risk of Cancer Empowered) http://www.facingyourrisk.org/ Support and education for women whose family history and genetic status put them at high risk of getting ovarian or breast cancer. Open to family members. Provides resources for women to determine if they are at high risk. Forums, chats, bulletin boards, member profiles and telephone support network.
United Cerebral Palsy Associations, Inc. http://www.ucp.org Supports local affiliates that run programs for individuals with cerebral palsy and other disabilities. Local programs include support groups for parents and adults with cerebral palsy. Information and referral, advocacy, research reports and information packets.
Lamaze International http://www.lamaze.org Dedicated to promoting normal, natural, healthy and fulfilling childbearing, breastfeeding and early parenting experiences through education, advocacy and reform. Newsletter, publications.
Neurofibromatosis, Inc http://www.nfinc.org Dedicated to individuals and families affected by the neurofibromatoses (NF-1, NF-2 and Schwannomatosis) through education, support, clinical and research programs and summer camp. Newletter, networking, printed materials, phone support, information and referrals. Assistance in starting groups.
National Association of Mothers' Centers https://www.motherscenter.org/sobi2/3.html Discussion groups and other activities regarding parenting, pregnancy, childbirth and childrearing. Warm, welcoming environment of support. National and some local newsletters, conferences an local, state and national advocacy efforts. NAMC provides info on location of local centers, starting a center and how employers in NY/NJ/CT can offer a program for working parents.
International Cesarean Awareness Network, Inc. (ICAN) http://www.ICAN-online.org Support for women healing from cesarean birth. Encouragement and information for those wanting vaginal birth after previous cesarean. Aims to lower the high cesarean rate through prevention and education. Newsletter. Chapter development guidebook.
Hereditary Neuropathy Foundation http://www.hnf-cure.org Sharing and caring community for those with Charcot-Marie-Tooth disease (also known as peroneal muscular dystriphy or hereditary motor sensory neuropthy) and other hereditary neuropathies. Information for patients and professionals. List of publications on various aspects of CMT available. Extensive online support materials and resources.
National Association of The Deaf http://www.nad.org Federation of state associations, organizational and business affiliates that fights for the civil rights of deaf and hard-of-hearing Americans. Offers grassroots and youth leadership develpment and legal expertise across a groad spectrum of areas including, but not limited to, accessibility, education,employment, healthcare, mental health, rehabilitiation, technology, telecommunication and transportation. Provides advocacy information and resources.
Rainbow Alliance of the Deaf http://www.rad.org Promotes the educational, economic and social welfare of deaf and hard of hearing gay, lesbian, bisexual, and transgendered persons, and their friends. Discussions of practical problems and solutions. Advocacy, conferences, newsletter, assistance in starting groups and moderated online mutual help activities. Online information on contacting a local chapter.
Benzoprotracted http://groups.yahoo.com/group/benzoprotracted Supportive environment to those who suffer from withdrawal symptoms after months, or years, of being free from benzodiazepine drugs.
National Spinal Cord Injury Association http://www.spinalcord.org Provides information and referrals on many topics to persons with spinal cord injuries and diseases, their families and interested professionals. Group development guidelines, monthly E-newsletter, support groups, peer counseling. Online listing of local chapters.
Barn Builders Peer Support Network http://www.barnbuilders.info Provides peer support through networking farmers and ranchers with disabilities. Connects recently injured individuals with persons with similar disability. Support through talking, correspondence and visitation.
Recovering Couples Anonymous http://www.recovering-couples.org 12-Step support group whose goal is to assist couples find freedom from dysfunctional patterns in their relationships. RCA is made up of couples committed to restoring healthy communication, and developing a caring and functional relationship. Offers local support group information.
EX-POSE (Ex-Partners Of Service members for Equality) http://www.ex-pose.org Primary information resource for spouses facing separation and divorce from a service member, active duty or retired. Lawyer referral service. Quarterly newsletter. Publishes New Member Information Letter. Membership dues $25.
Narcotics Anonymous http://www.na.org 12-Step. Worldwide multilingual, multicultural organization whose primary purpose is to help any individual stop using drugs. No dues, fees or registration. The only requirement for membership is the desire to stop using drugs. Information is available in several languages, on audio tape, CD and in Braille.
Cocaine Anonymous, Inc. http://ca.org 12-step fellowship of men and women who share their experience, strength and hope that they may solve their common problem and help others to recover from addiction. Quarterly newsletter. Group starter kit available.
Nar-Anon Family Group Headquarters, Inc. http://www.nar-anon.org 12-Step group offering self-help recovery to families and friends of addicts. Members share their experience, hopes and strengths with each other. Packet of information for starting new groups is available. Nar-Ateen and Nar-Atot programs available.
Co-Anon Family Groups http://www.co-anon.org 12-step program for families and friends of persons using cocaine, crack, or other drug addicts, whether they are actively using or not. Online e-mail and face-to-face meetings. Provides assistance in starting new groups.
Marijuana Anonymous World Services http://www.marijuana-anonymous.org 12-Step fellowship of men and women who desire to stay clean of marijuana. Literature and starter packets. Various online meetings.
Pancreatitis Association International http://health.groups.yahoo.com/group/pancreatitis Online internet discussion group which serves as a means of support and information.
PickingUpThePieces http://health.groups.yahoo.com/group/pickingupthepieces/ Support and educational group open to anybody interested in learning more about Herpes Simplex Virus (HSV)or Human Papillomavirus (HPV). Group message board available to share your story and ask questions.
Bell's Palsy InfoSite and Forums http://www.bellspalsy.ws/ Offers several forums for support and discussion (pregnancy, treatment experiences, emotional aspect, Facial Palsy, parents, etc.). Chatroom offers weekly scheduled Bell's Palsy and facial paralysis chats.
Pills Anonymous http://www.pillsanonymous.org Self-help, self-supporting, anonymous 12-step program, based on the principles of A.A., for those who want to help themselves and others recover from chemical addiction. Groups meet in New York City.
Epilepsy Foundation http://www.epilepsyfoundation.org Information and support for people with epilepsy, their families and friends. Publishes Epilepsy USA magazine and a wide range of informational materials for people of all ages. Referrals to local affiliates (many of which have employment related programs). Information and referrals.
RID (Remove Intoxicated Drivers) http://www.rid-usa.org Citizens' project organized to advocate against drunk driving, educate the public, reform legislation and aid victims of drunk driving. Newsletter. Chapter information kit ($20). For descriptive pamphlet send self-addressed stamped envelope.
National Organization for Victim Assistance http://www.try-nova.org Support and advocacy for victims and survivors of violent crimes and disasters. Newsletter, information, referrals, phone help, conferences, crisis response training and group development guidelines. Referrals to local self-help groups. Dues $50/individual; $200/organization.
MADD (Mothers Against Drunk Driving) http://www.madd.org The mission of MADD is to stop drunk driving, support victims of this violent crime and prevent underage drinking.
National Center for Missing Adults (NCMA) http://www.missingadults.org Operates as the national clearinghouse for missing adults, providing services and coordinationa between various government agencies, law enforcement, media and most importantly- the families of missing adults.
C.A.S.A. (Cleptomaniacs And Shoplifters Anonymous) http://www.kleptomaniacsanonymous.com Secular and 12-step support group for recovering shoplifters, kleptomaniacs and other persons suffering from dishonesty related to shoplifting, employee theft, fraud or cheating. Pen pals, information and referrals, phone support and books. Include self-addressed stamped envelope. Offers online chat room and e-group. Assistance in starting similar groups. To find state-by-state support group listing on website, at bottom of homepage click on "Shoplifting Addictions - Groups Nationwide".
Alpha 1 Association http://www.alpha1.org Support, advocacy and education for persons with alpha 1 antitrypsin deficiency and their families. Networking of members through newsletter and support groups across the country. Sharing of current information on treatments and research. Newsletter, group development guidelines, educational materials and advocacy information.
Asthma and Allergy Foundation of America http://www.aafa.org Serves persons with asthma and allergic diseases through the support of research, patient and public education, and advocacy. Newsletter, support/education groups. Assistance in starting and maintaining groups. Books, videos and other educational resources.
Trimethylaminuria Support Group http://health.groups.yahoo.com/group/trimethylaminuria Mutual support via discussion forum for those affected by the metabolic disorder trimethyaminuria (also known as fish odor syndrome, fish malodor syndrome and stale fish syndrome). Trimethylaminuria is an inability of the body to break down trimethylamone, consequently trimethylamine accumulates in the body and is then released in a person's sweat, urine and breath, giving off a strong fishy odor.
National Foster Parent Association, Inc. http://www.nfpainc.org Support, education and advocacy for foster parents and their children. Resource center for foster care information. Quarterly newsletter, annual national conference and workshops. Chapter development guidelines.
Dignity/USA http://www.dignityusa.org Organization of gay, lesbian, bisexual and transgendered Catholics, their families and friends. Concerned with spiritual development, feminism, education and advocacy. Newsletter. Chapter development guidelines.
International Foundation for Gender Education http://www.ifge.org Support and educational services for and about gender variant persons (including: transsexuals, cross-dressers, intersex, androgynies, non-gendered and multi-gendered persons). Services include referrals to local support groups and to medical and psychological professionals. Speakers program, publication of "Transgender Tapestry" magazine, Synchronicity Bookstore and national outreach.
Parents, Families and Friends of Lesbians and Gays (PFLAG) http://www.pflag.org Helps families understand and accept gay, lesbian, bisexual and transgendered family members. Offers help in strengthening families, support groups for families and friends, educational outreach, newsletter, chapter development guidelines, grassroots advocacy, information and referrals. Also has a Transgender Network (PFLAG TNET).
National Gay and Lesbian Task Force http://www.thetaskforce.org Advocacy and organizing for the rights of gay, lesbian, bisexual and transgendered people. Technical assistance for state and local organizers. Publications, materials and newsletter.
COURAGE http://www.couragerc.net Provides spiritual support and fellowship for men and women with same-sex attractions who are striving to live chaste lives in accordance with the Roman Catholic Church's teachings. The companion group, EnCourage, is for families and friends of same sex attractions. Newsletter, phone help, conferences and assistance in starting groups.
COLAGE (Children Of Lesbians And Gays Everywhere) http://www.colage.org Mission of COLAGE is to connect and empower people to make the world better for children of lesbian, gay, bisexual and transgender parents. Information and referrals, conferences, pen pals, literature and newsletter. Various online programs.
Family Equality Council http://www.familyequality.org Support, education and advocacy for gay, lesbian, transgender parents and prospective parents. Families welcome. Information, referrals, phone support, family events, literature and newsletter. Assistance in starting groups.
Straight Spouse Network (SSN) http://www.straightspouse.org Confidential personal support network serving current or former heterosexual spouses or parnters of gay, lesbian, bisexual or transgender mates and mixed orientation couples. Empowers spouses or parnters cope constructively and promotes understanding between spouses, within families and with the larger community through education and collaboration. Resource information, research-based publications, referrals, reading and media references and newsletter. Guideline available for starting new groups. Numerous confidential internet lists.
Rainbow Room Adult facilitated support group for gay, lesbian, bisexual, transgender and questioning youth (13-21). Provides a safe space for youth to talk about the issues that effect their daily lives.
Chromosome 22 Central http://www.c22c.org Networking and support for parents of children with any chromosome 22 disorder. Supports research. Offers literature, phone support, newsletter and e-mail support lists. Online bulletin boards.
EyesApart http://health.groups.yahoo.com/group/EyesApart/ Support forum for adults, teens and parents of children with Strabismus (also known as: crossed eyes, lazy eye, wall eyes, squint, double vision, turned, floating, wandering, wayward, drifting eyes) to discuss knowledge, experiences, problems and ideas related to Strabismus.
Chromosome 9P- Network http://www.9pminus.org Provides information, parent-to-parent networking and technical support to parents of children with 9P- and other deletions of 9P, ring 9, mosaic, translocations, inverted 9P, etc. Facilitates research to further understand monosomy 9P. Information, referrals, phone support and yearly conferences.
Aarskog Syndrome Parents Support Group Mutual support, networking, and sharing of ideas for families of children and adults affected by Aarskog Syndrome. Pen pal club, e-mail addresses and contact pages with mailing addresses for support via correspondence. Free complementary packet for any person in the United States.
National Adrenal Diseases Foundation http://www.nadf.us Dedicated to serving the needs of those with adrenal diseases and their families, especially through information, education and support groups. Quarterly newsletter, pamphlets and group development guidelines.
Aicardi Syndrome Newsletter, Inc. http://www.aicardisyndrome.org Support for families with daughters with Aicardi syndrome, a rare seizure disorder that affects primarily females and is characterized by seizures and retinal lesions. Information and referrals, resources, research projects, biennial conferences, phone support network, research group and newsletters. Dues $25/year.
Alagille Syndrome Alliance http://www.alagille.org Support network for anyone who cares about people with Alagille syndrome, a rare, multi-symptom, genetic disorder. Disseminates information. Aims to increase awareness in general public as well as health professionals. Newsletter, phone support, information and referrals, medical advisory board.
NOAH (National Organization for Albinism and Hypopigmentation) http://www.albinism.org/ Support and information for individuals, families and professionals about albinism (a lack of melanin pigment). Encourages research leading to improved diagnosis and treatment. Newsletter, online community, regional gatherings, chapter development guideliens and national conference. Dues $20 ind/ $25 family.
Turner Syndrome Society of Canada http://www.turnersyndrome.ca Provides support and education to Turner syndrome patients and their families. Tapes, publications, referrals to U.S. and Canada groups. Newsletter, pen pal program, chapter development guidelines and annual conference.
Dyslexia Talk http://www.dyslexiatalk.com Support for anyone affected by dyslexia. Offers message board, open discussions and separate support group for parents.
FAAN (Food Allergy & Anaphylaxis Network) http://www.foodallergy.org Mission is to increase public awareness about food allergies and anaphylaxis, provide advocacy and education, and advance research on behalf of all those affected by food allergies and anaphylaxis, a severe life-threatening reaction that can result in hives, swelling, unconsciousness, and possibly death. Information and referrals, conferences, literature, phone support, booklets, newsletters and educational videos. Guidelines available for starting similar groups.
National Alopecia Areata Foundation http://www.naaf.org Support network for people with alopecia areata, totalis, and universalis. Sets up support groups around the country, educates the public, and fundraises for research. Quarterly newsletter, support group guidelines.
Juvenile Scleroderma Network http://www.jsdn.org Support network connecting children with juvenile scleroderma with each other to help them feel less isolated and less frightened. Provides comfort and reassurance to families. Membership $20/yr. Newsletter, informaiton and referrals, literature, advocacy, telephone support network and pen pal program. Moderated message board and e-mail groups.
Alstrom Syndrome International http://www.alstrom.org Provides support and networking for families affected by Alstrom syndrome. Supports medical research initiatives to more fully understand the syndrome's complexities and develop better therapies for Alstrom patients. Publishes a quarterly newsletter and offers online mutual help activities. Provides information resources to families, educators, researchers and physicians.
Alveolar Capillary Dysplasia Association http://www.acd-association.com Mutual support for families who have lost a child to alveolar capillary dysplasia (ACD), a congenital lung disorder. Aim is to share information while offering supportive environment to share fears and concerns. Encourages research into cause and cure. Literature, networking, information newsletter and referrals.
Acid Maltase Deficiency Association (AMDA) http://www.amda-pompe.org Support and information for persons affected by Pompe disease (acid maltase deficiency). Newsletter, literature, information and referrals, and phone support. Supports research into the cause and cure.
Anorchidism Support Group http://freespace.virgin.net/asg.uk Information and support for families and persons affected by anorchidism (absence of the testes) whether congenital or acquired (aka testicular regression syndrome, anorchia, vanishing testes syndrome or absent testes). Newsletter. Provides information and support via phone, letter or e-mail. An information leaflet available on request.
AISSG-USA (Androgen Insensitivity Syndrome Support Group) http://www.aissgusa.org Provides support and information to people affected by androgen insensitivity syndrome (AIS), and similar disorders of sex development/intersex conditions. Support for affected adults, parents and teens (including online chat forums). Information and referrals, phone support, regional and national support group meetings, literature, advocacy and newsletters.
Cooley's Anemia Foundation http://www.cooleysanemia.org Education and networking for families affected by Cooley's anemia (thalassemia). Fund-raising for research. Newsletter, annual seminars, research grants, patient support group, patient services and chapter development guidelines.
Aplastic Anemia & MDS International Foundation, Inc. http://www.aamds.org Emotional support and worldwide support groups, free educational materials, information about current research and clinical trials, and financial assistance for persons with aplastic anemia, myelodysplastic syndromes, paroxysmal nocturnal hemoglobinura, and othr bone marrow failure diseases.
Parents Anonymous, Inc. http://www.parentsanonymous.org Country's oldest child abuse prevention organization. Opportunity for parents to learn new skills, transform their attitudes and behaviors, and create lasting changes in their lives. Group meetings offer free structured children's programs. Helps to develop new community groups by providing training and technical assistance, materials and networking.
Apert Syndrome Pen Pals Group correspondence program for persons with Apert syndrome to share experiences. Pen pals, phone help, information and referrals.
National Aphasia Association http://www.aphasia.org Educates the public about aphasia. Provides information to patients and their families about coping with aphasia. Listing of state representatives and support groups.
Apraxia-Kids (A program of The Childhood Apraxia of Speech Association) http://www.apraxia-kids.org Information and support for parents of children with apraxia of speech; speech-language pathologists and others interested in apraxia. Provides encouragement for parents to start support groups. Education, multi-media educational products, newsletter, literature, conferences, research, information, listserv, message boards, e-mail and help desk referrals to self-help groups nationwide.
World Arnold Chiari Malformation Association http://www.wacma.com/ Provides information, support and understanding to persons concerned with Arnold Chiari malformation. Separate adult and children's online support groups.
National Ataxia Foundation http://www.ataxia.org Assists families with ataxia. Provides education for professionals and the public. Encourages prevention through genetic counseling. Promotes research into causes and treatment. Newsletter, information and referral, assistance in starting new support groups. Group development guidelines.
Batten Disease Support and Research Association http://www.bdsra.org Emotional support for persons with Batten disease. Information and referrals, support group meetings, phone support, conferences, newsletter. Assistance provided for starting new groups.
Benign Essential Blepharospasm Research Foundation, Inc. http://www.blepharospasm.org Provides information and emotional support to persons with benign essential blepharospasm (BEB). Networks people together with similar symptoms. Doctor referrals, education. Supports research. Bimonthly newsletter. Local group development guidelines. Voluntary contributions.
Association for the Bladder Exstrophy Community http://www.bladderexstrophy.com/ Mutual support for persons affected by bladder exstrophy including parents of children with bladder exstrophy, adults, healthcare professionals and others interested in exstrophy. Newsletter, literature, information and referrals, informal pen pal program, conferences, advocacy, directory of members. Informal kids e-mail exchange. Dues $25/year.
Blood and Marrow Transplant Information Network http://www.bmtinfonet.org Publishes "Blood and Marrow Transplant Newsletter" for bone marrow, peripheral stem cell, and cord blood transplant patients, and a 228-page book, "Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients" which describes the physical and emotional aspects of marrow and stem transplantation. Also publishes a 208-page book "Autologous Stem Cell Transplant: A Handbook for Patients". Transplant Center database has information about 220 transplant programs in U.S. and Canada, a resource directory, attorney referral service, and a patient-to-survivor link service.
The Brachial Plexus Palsy Foundation http://www.brachialplexuspalsyfoundation.org Information resources, education and support for families and individuals affected by brachial plexus palsy (also known as brachial plexus injury or Erb's palsy). Online support message board, annual family event, and fundraiser. Funds BPI research and has scholarships available.
Congenital Adrenal Hyperplasia http://www.magicfoundation.org Offers educational and emotional support to families of children with congenital adrenal hyperplasia. Provides information and referrals, kid program, phone support, annual convention, networking. Quarterly newsletter. Assistance in starting new groups.
CBGD (Corticobasal Ganglionic Degeneration) Support Network http://health.groups.yahoo.com/group/cbgd_support Support for anyone affected by with corticobasal ganglionic degeneration (a rare neurological disorder characterized by cell loss in the brain). Offers education, information and newsletter. Networks members together for emotional support.
CCHS Network (Congenital Central Hypoventilation) http://www.cchsnetwork.org Mutual support for families caring for a child who has congenital central hypoventilation syndrome (aka Ondine's Curse). Provides information and referrals, family newsletter, physician directory and equipment information. Facilitates and supports CCHS research. Holds family educational conferences every three years. Provides online referrals to local support groups. Family directory for CCHS families in the US and around the world available to families via website. Directory contains phone and other contact information.
CDG Family Network Foundation http://www.cdgs.com Support for parents of children diagnosed with congenital disorders of glycosylation, an inherited metabolic disease affecting all body parts, especially the central and peripheral nervous systems. Support is attained primarily online, but the the group also provides information and referrals, biannual newsletter, phone support and advocacy. Bulletin board for families to interact with questions, comments and updates.
Gluten Intolerance Group of North America http://www.gluten.net Mission is to increase awareness by providing accurate and up-to-date information, education and support to persons with gluten intoerance, celiac disease/dermatitis herpetiformis, their families, health care professionals and the public. Offers e-mail support, news magazine ($35), information and referral, conferences, guideance to those starting groups, group development guidelines and cookbooks.
American Celiac Society / Dietary Support Coalition http://www.americanceliacsociety.org Mutual support and information for celiac-sprue patients, families and health care professionals. Buddy system, visitation, phone help system, participation in educational efforts. Also supports dermatitis herpetiformis, Crohn's disease, lactose intolerance and other food allergies. Newsletter.
Celiac Sprue Association/United States of America, Inc. http://www.csaceliacs.org Provides educational materials on celiac sprue, dermatitis herpetiformis and basics for the gluten-free diet to patients, parents of children and professionals. Children's camp in August in Rhode Island. CelKids network. Provides opportunities for support groups and networking with patients and professionals. Newsletter and annual conference. Group development guidelines.
CFC International http://www.cfcsyndrome.org Mutual support for parents and providers of children with Cardio-Facio-Cutaneous syndrome. Strives to find and disseminate information on CFC syndrome. Offers newsletter, information and referrals, online listserv and phone support. Information on medical advisors and genetic testing. International clinic and family conferences every two years.
CFIDS Association, Inc. http://www.cfids.org Advocacy, information and encouragement for persons with chronic fatigue immune dysfunction syndrome. Publisher of CFIDS Chronicle newsletter ($35/US; $45/Canada; $60/Overseas/Airmail) and Research newsletter.
CHARGE Syndrome Foundation, Inc. http://www.chargesyndrome.org Networking of families affected by CHARGE Syndrome (coloboma of the eye, heart malformations, atresia of the nasal passages, retardation of growth and/or development, genital hypoplasia, ear malformations). Publications include CHARGE syndrome brochure, New Parent packet (12+ pgs.), "CHARGE Syndrome: A Management Manual for Parents" (270+ pgs.), Professional packet (35+ pgs.) and conference papers. Membership ($15/families; $20/professionals; $30/organizations) includes quarterly newsletter and patent-to-parent support. Moderated online support activities. Conferences in odd years (e.g. 2005).
H.E.A.L. (Human Ecology Action League, Inc.) http://www.healnatl.org Education and information for persons concerned about the health effects of environmental exposures. Quarterly newsletter. Other publications include: information sheets, resource list, directories, reading list, and book "Fragrance and Health". Referrals to local and regional chapters and support services. Dues $28 (US); $34 (Canada); $40 (International).
National Center for Environmental Health Strategies Fosters the development of creative solutions to environmental health problems with a focus on indoor environmental quality, chemical sensitivities and environmental disabilities. Clearinghouse and technical services, educational materials, workshops, community outreach, policy development, research, support and advocacy for persons injured by chemical/environmental exposures. Special projects on school-related exposures and Gulf War veterans. Books and publications. Focus on access, accommodation and disability rights.
Chromosome Deletion Outreach http://www.chromodisorder.org Provides support and information for families affected by rare chromosome disorders. Membership is free.
National Center for Chromosome Inversions Mutual support for families affected by chromosome inversions. Phone support, pen pal program, information and referrals.
Prescription Parents, Inc. http://www.prescriptionparents.org Support group for families of children with cleft lip and palate. Education for parents of newborns. Family social events and phone support network.
Cleft Palate Foundation http://www.cleftline.org Provides information and referrals to individuals with cleft lip and palate or other craniofacial anomalies. Referrals are made to local cleft palate/craniofacial teams for treatment and to parent support groups. Free information on various aspects of clefting for parents and individuals.
Charcot-Marie-Tooth Association http://www.charcot-marie-tooth.org Information and support for patients and families affected by Charcot-Marie-Tooth disorders (also known as peroneal muscular atrophy or hereditary motor sensory neuropathy). Referrals, newsletter, phone help, support groups, conferences. Assistance in starting new groups.
National Congenital Cytomegalovirus Disease Registry http://www.bcm.tmc.edu/pedi/infect/cmv Parent support network that provides support to families of children with congenital cytomegalovirus disease (CMV). Information, referrals, newsletter and literature.
GRASP - The Global and Regional Asperger Syndrome Partnership http://www.grasp.org Support network for adults with a diagnosis on the autism spectrum with high functioning autism, Asperger syndrome or pervasive developmental disorder. Newsletter, literature, advocacy, information and referrals and assistance in starting local chapters. Also has an Orthodox Jewish Network for the Tri-State area in New York, along with a teen group.
The Cobalamin Network Emotional support and information for families of children affected by inborn errors of cobalamin metabolism. Referrals to pediatric metabolic practitioners.
Dubowitz Syndrome Information & Parent Support http://www.dubowitz.org Provides support, understanding and information to families affected by Dubowitz syndrome, a rare genetic disorder defined by growth retardation, microcephaly, and a characteristic facial appearance. Literature, information and referrals, phone support, pen pal program.
International Costello Syndrome Support Group http://costellokids.com Mutual support for parents of children with Costello syndrome. Information and referrals, literature, 2 yearly international conferences, phone support and pen pals.
Safe Tables Our Priority (S.T.O.P.) http://www.safetables.org Offers support, education and advocacy for victims and family of victims of food borne infectious diseases (E.coli, salmonella listeria, shigella, vibrio and many others). Phone and online networking, newsltter and annual meeting.
CJD Voice http://www.cjdvoice.org Provides emotional support and information to persons who have a loved one with, or lost someone to, Creutzfeldt-Jakob disease, a fatal brain-deteriorating disorder. E-mail discussion group, message board and scheduled chatroom sessions.
Coffin-Siris Syndrome Support Group Provides support and information for families of persons with Coffin-Siris syndrome to gain a better understanding of this disorder. Educational materials. Newsletter, literature, information and referrals, phone support network, pen pals, conference.
Cushing's Support and Research Foundation, Inc. http://csrf.net Provides support and information to patients with Cushing's. Networking and newsletter so patients can contact others with Cushing's.
Dandy-Walker Syndrome Network Provides mutual support, information and networking for families affected by Dandy-Walker syndrome. Phone support.
DEBRA of America (Dystrophic Epidermolysis Bullosa Research Association) http://www.debra.org Support and information for families affected by dystrophic epidermolysis bullosa. Promotes research, provides education for patients, families and professionals, emergency financial support, emergency wound care supplies, New Family Advocate program, information and referrals, newsletter, biennial national conferences.
Dentatorubral Pallidoluysian Atrophy Network (DRPLA) Support and information for persons affected by dentatorubral pallidoluysian atrophy, a rare genetic disorder that leads to physical and cognitive problems. Phone support and pen pals. Online and e-mail discussions.
Dancing Eye Syndrome Support and information for families of children with dancing eye syndrome (aka Kinsbourne syndrome, opsoclonus myoclonus or myoclonic encephalopathy of infants), a disorder consisting of loss of balance, irregular eye movements and muscle jerking. Newsletter and phone help.
The Dysautonomia Foundation, Inc. http://www.familialdysautonomia.org Provides peer support, information and referrals for families affected by familial dysautonomia. Raises funds for medical and clinic research as well as for public awareness of the disease. Testing for all Ashkenazi Jewish individuals is now available. Newsletter.
Treacher Collins Connection http://www.tcconnection.org Provides support, networking and education for individuals who are affected by Treacher Collins syndrome.
Dystonia Medical Research Foundation http://www.dystonia-foundation.org/ Provides education, awareness and support groups for persons with dystonia. Fundraises for research. Newsletter, information and referrals and referrals to local groups. Also offers guidelines for starting similar groups.
National Foundation for Ectodermal Dysplasias http://www.nfed.org Distributes information on ectodermal dysplasia syndrome and treatments. Provides support programs for families and funds research projects. Quarterly newsletter. Annual family conference and regional conferences, dental implant program and scholarship opportunities. Directory of members for informal contacts among families.
National Eczema Association http://www.nationaleczema.org Provides support for persons with atopic dermatitis as well as other forms of eczema. Promotes education and research. Offers information and referrals, networking and newsletter. Donations accepted.
Ehlers-Danlos National Foundation http://www.ednf.org Provides resources for Ehlers-Danlos syndrome patients, families and health care professionals. Mission is to disseminate accurate information, to provide a network of support and communication and to foster and support research. Online message boards for EDNF members.
Encephalitis Society Resource Centre, The http://www.encephalitis.info Provides support and information for persons with encephalitis (inflammation of the brain) and their families. Aims to educate public and professionals about the condition. Newletter, information and referrals.
International Essential Tremor Foundation http://www.essentialtremor.org/ Provides information and support for persons affected by essential tremor. Information and referrals, literature and research updates. Quarterly newsletter. Dues $30/yr.
Forward Face http://www.forwardface.org Mutual support for people with craniofacial disfigurement and their families. Strongly advocates educating members and the public in the quest for understanding and acceptance. Liaison with medical personnel. Newsletter. Videotapes. Dues $30. Teen/young adult support group: "The Inner Faces".
AmeriFace http://www.aboutfaceusa.org Provides emotional support and information to persons with facial differences and their families. Network database of 900+ families who have similar concerns. Promotes public education and awareness. Also has cleft advocate program which provides online parent-patient support network. News-letter, information and referrals.
Fetal Alcohol Syndrome Family Resource Institute http://www.fetalalcoholsyndrome.org Grassroots coalition of families and professionals concerned with fetal alcohol syndrome/effects. Educational programs, brochures and information packets. Support group meetings. Advocacy, information and referrals, phone support and conferences.
Family Empowerment Network (FEN) http://www.fammed.wisc.edu/fen Support, education, advocacy and training for families of children and adults with fetal alcohol spectrum disorders or fetal alcohol effects, and interested professionals. Family retreats and newsletter. Fetal alcohol spectrum disorder (FASD) resouces, education and referrals for diagnosis. Networks families together for support. Membership is free. Assistance in starting support groups. Monthly parent teleconferences.
FG Syndrome Homepage http://www.fg-syndrome.org Support network for persons interested in FG Syndrome, a multiple congenital genetic anomaly. Online chat group. Newsletter, listserv, conferences, fundraising and general family support.
International Fibrodysplasia Ossificans Progressiva Association http://www.ifopa.org Serves as a support network for families dealing with fibrodysplasia ossificans progressiva (FOP). Supports education, communication and medical research. Newsletter.
The National Fragile X Foundation http://www.FragileX.org Mission includes phone and e-mail support, promoting awareness, education, research and legislative advocacy regarding fragile x syndrome, a hereditary condition which is the most common known cause of inherited mental impairment. Services also include a quarterly journal, research grants, local, national and international conferences and educational resources (books and videotapes for a fee).
FRAXA Research Foundation http://www.fraxa.org Support and information on Fragile-X syndrome. Funds medical research, investigator-initiated grants and postdoctoral fellowships. Newsletter and literature. Some chapters have support group meetings. Guidelines available on starting a similar group.
Freeman-Sheldon Parent Support Group http://www.fspsg.org Provides emotional support for parents of children with Freeman-Sheldon syndrome, and for adults with this syndrome. Sharing of helpful medical literature. Provides information on growth and development of individuals affected. Participates in research projects. Members network by phone, mail and through a members-only listserv.
FSH Society, Inc. http://www.fshsociety.org Support, information, education, networking and advocacy for individuals with facioscapulohumeral disease (aka Landouzy-Dejerine muscular dystrophy). Its purpose is to increase awareness, understanding and conduct research and education on the second most prevalent muscular dystrophy in adults. Funds research through grants to researchers. Acts as a Clearinghouse for information on the FSHD disorder and on potential drugs and devices designed to alleviate the effects of the disease. Newsletter, support group meetings, conferences and literature.
Parents of Galactosemic Children, Inc. http://www.galactosemia.org Information and mutual support for parents of galactosemic children. Publications, pen pals, conferences, phone support and online message board.
PAGER (Pediatric/Adolescent Gastroesophageal Reflux Association) http://www.reflux.org Offers support and information for parents whose children suffer from gastroesophageal reflux (GER), an inappropriate backwash of stomach contents into the esophagus that affects millions of children and adults. Educates the public on this disorder. Newsletter, literature and telephone support network. Website with 300+ information and 20,000+ messages from parents. Helps new chapters start when leaders are identified. Extensive free information is available via website and mail.
National Gaucher Foundation http://www.gaucherdisease.org Provides information and assistance for those affected by Gaucher disease. Provides education and outreach to increase public awareness. Operates the Gaucher Disease Family Support Network. Quarterly newsletter, phone support and medical board. Guidelines to help start similar groups.
The Genetic Alliance http://www.geneticalliance.org Provides technical assistance to genetic support groups and disseminates information to the public on available resources and referrals. Fosters a partnership among consumers and professionals to enhance education and service for the needs of individuals affected by genetic disorders. Supports networking efforts of members of government agencies, professional groups, service providers and organizations.
Association For Glycogen Storage Disease http://www.agsdus.org Mutual support and information sharing among parents of children and patients with glycogen storage disease. Fosters communication between parents, patients and professionals, creates public awareness and encourages research. Offers GSDnet support broup via e-mail. Newsletter, phone support and conference.
The Gorlin Syndrome Group http://www.gorlingroup.org Provides support and information for individuals with Gorlin syndrome (aka nevoid basal cell carcinoma) and their families. Information on coping skills, treatments and current research. Helpline, newsletter, meetings and networking.
National Graves' Disease Foundation http://www.ngdf.org Aim is to establish patient-based Graves' exclusive support groups to provide better treatment and to increase public awareness. Participates in research. Newsletter, information and referrals, phone support, national conferences, internet bulletin board, and weekly online chat room. Each group has medical back-up/resource.
Chronic Granulomatous Disease Association, Inc. http://www.cgdassociation.org Support and information for persons with chronic granulomatous disease, their families and physicians. Networks patients with similar CGD-related illnesses. Support through correspondence and telephone. Newsletter. Publishes medical and research articles semiannually. International registry of patients. Referrals to physicians.
GBS/CIDP Syndrome Foundation International http://www.gbs-cidp.org Emotional support, hospital visitation and education for people affected by Guillain-Barre syndrome, CIDP and its variants. Promotes support, education, and research. Newsletter, pen pals, phone network, online chat room. Group development guidelines and international symposium.
NBIA Disorders Association http://www.NBIAdisorders.org Provides emotional support to families affected by Neurodegeneration with Brain Iron Accumulation, a rare, progressive neurological disorder resulting in iron deposits in the brain that cause loss of muscle control. Formerly Hallervorden-Spatz syndrome. Educates public on neurodegenerations with brain iron accumulation and supports and monitors research through grants and Biobank. Newsletter, literature, bi-annual conferences, online listserv, family networking program and advocacy efforts.
National Headache Foundation http://www.headaches.org Mutual support for chronic headache sufferers and their families. Education on how to deal with chronic head pain. Group meetings, phone support, e-mail pen pals and group development guidelines. Public awareness seminars. Funds research. Newsletter, brochures and information on diets.
Hemangioma Support System Provides parent-to-parent support for families with children affected by hemangiomas.
National Hemophilia Foundation http://www.hemophilia.org Dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.
Hepatitis Foundation International http://www.hepfi.org Grassroots support network for persons with viral hepatitis. Provides education about the prevention, diagnosis and treatment of viral hepatitis. Phone support network and literature. Referrals to local support groups. Quarterly newsletter. Some materials available in Spanish, Mandarin and Vietnamese.
HHT Foundation International, Inc. http://www.hht.org Mutual support and education for persons interested in hereditary hemorrhagic telangiectasia (aka Osler-Weber-Rendu syndrome). Supports clinical and genetic research. Counseling and advice for patients. Referrals to appropriate treatment centers. Annual patient/doctor conference. Tri-annual newsletter "Direct Connection." Aims to protect all members under the Right To Privacy Act. Dues $45/yr.
Totally Hip http://www.totallyhip.org Support to help relieve the fear of total hip replacement surgery, share experiences and offer moral as well as spiritual support to patients. Helps answer questions on hip replacement. Also discuss other joint problems. Click on bulletin board at website for message exchange.
Histiocytosis Association of America http://www.histio.org Mutual support and information for parents and patients with this group of rare disorders. Includes erdheim-chester disease, sinus histiocytosis rosai dorfman, xantho-granuloma, hemophagocytic lymphohistocsytosis, pulmonary eosinophilic granuloma, histocytosis and familial erythro-phagocytic lymphohistiocytosis. Provides parent-patient directory to facilitate networking and communication. Funds research. Literature and pamphlets (some available in Spanish), newsletter.
Social Phobics Anonymous http://www.healsocialanxiety.com 12-Step face-to-face and telephone groups that provides support for people who suffer from social phobia or social anxiety. Assists others in starting local groups. Meeting information available on website. Call Phil 720-882-8976.
Hermansky-Pudlak Syndrome Network http://www.hpsnetwork.org Mutual support and education for families affected by Hermansky-Pudlak syndrome and Chediak Higashi syndrome. Networks families together for support. Newsletter and annual conference. Supports research.
Hydrocephalus Association http://www.hydroassoc.org Provides support, education and advocacy for people with hydrocephalus and their families. Provides a wealth of resource materials on hydrocephalus for all age groups, quarterly newsletter, directory of neurosurgeons, bi-annual national conference and scholarships for young adults. Information and support available in English and Spanish.
Pull-Thru Network http://www.pullthrough.org Support and information for the families with children born with an anorectal, colorectal or urogenital disorder and any of the associated diagnoses. Disorders include cloaca, bladder exstrophy, imperforate anus, VACTERL/VATER associa-tion, anal stenosis, cloacal exstrophy and Hirschsprung's Disease and the associated diagnoses. Maintains a database for member networking. Quarterly magazine. Online discussion group. Weekly chat for members. Phone support and literature. Dues $30/yr - free membership upon request.
Incontinentia Pigmenti International Foundation http://www.IPIF.org Dedicated to research, family support and physician awareness on incontinentia pigmenti. Maintains international database of patients.
Interstitial Cystitis Association http://www.ichelp.org Provides education, information and support for persons with interstitial cystitis and their spouses and families. Quarterly newsletter. Dues $45/yr.
Attachment Parenting International http://www.attachmentparenting.org Offers parenting methods to create strong, healthy emotional bonds between parents and their children. Dues $35/yr. Offers support group referrals, quarterly publication, advocacy, literature, information and referrals.
International Joseph Diseases Foundation, Inc. http://www.ijdf.net Support network for patients, families and health care professionals concerned about Joseph disease. Offers information, referrals to DNA marker test sites and newsletter. Helps patients find services. Dues $15/year.
Kennedy's Disease Association, Inc. http://www.kennedysdisease.org Mutual support and information for persons with Kennedy's disease (aka spinal and bulbar muscular atrophy) and their families and caregivers. Opportunity to share personal experiences to help alleviate the feeling of aloneness and to engender hope and a positive attitude. Sharing of information regarding diagnosis, treatment and current research. Online chat room every two weeks.
The KFS Circle of Friends http://members.fortunecity.com/bethc/kfs.html Networks families together for emotional support. Support and information provided mainly online, but literature and pen pals are available. Provides information on Klippel-Feil syndrome, a rare, congenital disorder primarily comprised of cervical-spine fusion, renal abnormalities and scoliosis.
United Leukodystrophy Foundation, Inc. http://www.ulf.org Offers communication network among families. Provides information and resources for leukodystrophy patients and their families. Promotes research, public and professional awareness. Quarterly newsletter and national conference. Dues $25/family; $50/professional.
Lowe Syndrome Association http://www.lowesyndrome.org For parents, friends, professionals and others who are interested in Lowe syndrome. Provides medical and educational information and online discussion. Supports medical research. Offers booklet and newsletter. International conference. Dues $15 (can be waived if parents are in need).
National Lymphedema Network, Inc. http://www.lymphnet.org Support groups and information re: primary and secondary lymphedema for patients and professionals. Newsletter, telephone infoline, conferences, pen pal program, referrals to treatment centers and physicians. Assistance in starting new groups. Dues $45.
Malignant Hyperthermia Association of the U.S. (MHAUS) http://www.mhaus.org Support, information and education for malignant hyperthermia-susceptible patients, their physicians and health care professionals. Conducts limited research. Newsletter, literature and regional conferences.
International Advocate for Glycoprotein Storage Disease (ISMRD) http://www.ismrd.org Provides emotional support for families affected by any glyprotein storage disease. Offers educational resources for medical community. Promotes research to develop treatments. Phone support, literature, pen pals, information and referrals, newsletter and advocacy. Online message boards, chat rooms and e-mail discussions.
National Marfan Foundation http://www.marfan.org Network includes chapters, support groups and volunteer telephone support contacts. Provides information on Marfan syndrome and related connective tissue disorders to patients, families, medical professionals and the public. Provides a means for patients and relatives to share experiences and support one another. Supports and fosters research. Conference, newsletter and publications.
McCune-Albright Syndrome/Fibrous Dysplasia Division http://www.magicfoundation.org Provides support for families of McCune-Albright syndrome patients. Newsletters, updated medical information, phone support and annual conventions. Dues $35/yr.
Multiple Endocrine Neoplasia Society (MENS) Mutual support to persons afflicted with familial multiple endocrine neoplasia type 1 (aka Wermer syndrome or adenomatosis), and their families. MEN1 affects the endocrine glands. Literature, information and referrals, phone support and pen pals. Access to doctors and current research.
Foundation for Nager and Miller Syndromes http://www.fnms.net Networking for families that are affected by Nager or Miller syndromes. Provides referrals, library of information, phone support, newsletter, brochures and scholarships for Camp About Face.
United Mitochondrial Disease Foundation (UMDF) http://www.umdf.org Provides support to affected individuals and families, and promotes research and education for the diagnosis, treatment and cure of mitochondrial disorders. Chapter and support groups, networking for families affected by mitochondrial disease -a genetic, degenerative disease. Quarterly newsletter, information and referrals, library of medical publications, patient registry, phone help and annual symposium. Awards research grants.
Moebius Syndrome Foundation http://www.moebiussyndrome.com Communication and support network for persons with Moebius syndrome (a paralysis of the 6th and 7th cranial nerves), and their families. Information and education. Fund raising for research. Newsletter, phone support, informal meetings and national conference. Help in starting groups.
Association of Gastrointestinal Motility Disorders, Inc. (AGMD) http://www.agmd-gimotility.org Support and education for persons affected by digestive motility disorders. Serves as educational resource and information base for medical professionals. Physician referrals, video tapes, large variety of educational materials, networking support, symposiums and several publications. General membership dues $35/US; $42/Int'l (can be waived).
The International Morquio Support Group http://www.morquio.com Provides support and education for families of children with Morquio Type A. Helps educate health care professionals about this lysosomal storage disease. Funds research. Maintains database of families. Referrals to physicians and medical information. Pen pals, phone support, conferences and newsletter. Online guestbook and helpful links.
National MPS Society http://www.mpssociety.org Provides support and hope for individuals with mucopolyscaccharidoses or mucolipidoses (and their families) through research, advocacy, public education and parent referral service for support networking.
Arrhythmia Alliance (The Heart Rhythm Charity) http://www.heartrhythmcharity.org.uk A network of sufferers, medical professionals, various UK based charities and related industry promoting better understanding, diagnosis, treatment and quality of life for individuals with cardiac arrhythmias.
Maple Syrup Urine Disease Family Support Group http://www.msud-support.org Opportunity for support and personal contact for those with maple syrup urine disease and their families. Provides information on MSUD. Aims to strengthen the liaison between families and professionals. Encourages research and newborn screening for MSUD. Newsletter ($10/yr), phone support, conferences and advocacy.
Parent Project for Muscular Dystrophy Research, Inc. http://www.parentprojectmd.org Support for parents of children with Duchenne and Becker muscular dystrophy. To improve the treatment, quality of life and long-term outlook for all individuals affected by DMD through research, advocacy, education and compassion. Provides user-friendly website with online forums, scientific and legislative conferences, newsletters, information on newest diagnosis, standards of care and research strategies.
S.M.D.I. International (Society for Muscular Dystrophy Information) Purpose is to share and encourage the exchange of non-technical, neuromuscular disorder and disability related information. Referrals to support groups via networking website.
Muscular Dystrophy Association (MDA) http://www.mda.org Provides comprehensive medical services to persons with neuromuscular disease. Supports research into the causes, cures and treatments of neuromuscular disorders. Support programs including self-help groups, phone friends, pen pals and scheduled online chat sessions.
MPD-Net http://www.mpdinfo.org Support network enabling persons with myeloproliferative disease to share their experiences and problems. Supports research. Publishes materials pertaining to MPD. Professional involvement. Newsletter, phone support, conferences, information and referrals. Online listserve with 1800 menbers with MPD who exchange e-mails about their disease.
Myotubular Myopathy Resource Group http://www.mtmrg.org Information for patients, parents and doctors regarding myotubular myopathy, a family of three rare muscle disorders usually causing low muscle tone and diminished respiratory capacity. Exchanging of successes with other affected families. Phone support, information and referrals, newsletter and literature.
Narcolepsy Network http://www.narcolepsynetwork.org Support for persons with narcolepsy or other hypersomnias seeking to optimize their quality of life. Offers communication, advocacy, research, education, support, help with coping skills and family & community problems. Quarterly newsletters, yearly conference, phone support and support group development guidelines. Individual dues $35/yr.
National Necrotizing Fasciitis Foundation http://www.nnff.com Provides education and support for persons affected by necrotizing fasciitis (aka flesh-eating bacteria). Aim is to educate public and advocate for research. Provides literature, phone support, newsletter, pen pals, conferences, and information and referrals. Publishes "Surviving the Flesh-Eating Bacteria: Understanding, Preventing, Treating And Living With the Effects of Necrotizing Fasciitis."
Children's Tumor Foundation http://www.ctf.org For patients with neurofibromatosis and their families. Promotes and supports research on the causes of and cure for NF. Provides information, assistance and education. Dues $40/year. Quarterly newsletter. Professional grants awarded for research.
Neuropathy Association http://www.neuropathy.org Provides information on local support groups, and different types of neuropathy. Newsletter, literature, information and referrals and phone support. Online bulletin board, referrals to doctors.
Nevus Network http://www.nevusnetwork.org Provides a network of support and information for people with a large brown birthmark called a giant congenital nevus and/or an associated condition called neurocultaneous melanosis.
Nevus Outreach, Inc. http://www.nevus.org/ Dedicated to improving awareness and providing support for people affected by congenital pigmentd nevi and finding a cure. Website, literature, 24-hour support hotline and international conferences.
National Niemann-Pick Disease Foundation, Inc. http://www.nnpdf.org Provides support for families affected by Niemann-Pick disease type A,B and C. Promotes and supports research. Provides newsletter, family directory, networking, family conference, phone support, information and referrals. Guidelines available to help start similar groups.
Nemaline Myopathy Support Group http://www.nemaline.org Grassroots group that networks families affected by pediatric/adult Nemaline Myopathy for support and information. Pen pals, literature, phone support, information and referrals available through several Yahoo egroups targeting age groups and English, Spanish and German speaking families. NM Conventions organized to meet researchers and other families.
American Nystagmus Network http://www.nystagmus.org Network of persons affected by nystagmus, an involuntary, rapid movement of the eyeball. Open to parents of affected children, adults with nystagmus and interested professionals. Provides general information. Promotes research into cause and cure. E-mail discussion group, discussion board, biannual newsletter and conferences.
NARA (Not A Rose Association) / BOSS (Body Odor Support Services) Mutual support for persons suffering from "odorous" conditions of the body, breath or unknown sources. Offers coping skills.
Opitz G/BBB Family Network http://www.opitznet.org Support, encouragement, education, and sharing of successes and ideas for families affected by Opitz-G/BBB syndrome. Maintains database of members, literature, information, e-group, phone support and newsletter. Referrals to other families. Family conferences.
ON/AVN Support Group International Association, Inc. http://www.osteonecrosisavnsupport.org Support for persons who suffer from osteonecrosis aka avascular necrosis. Goal is to inform and educate the world about osteonecrosis and offer emotional support to both those with ON/AVN and their families. Provides information and referrals. Also has special section for youth with ON/AVN. Open to other chronic bone, joint or muscular conditions and persons with joint replacements.
National Osteoporosis Foundation http://www.nof.org Dedicated to reducing the widespread prevalence of osteoporosis through programs of research, education and advocacy. Provides referrals to existing support groups, educational materials, as well as free resources and materials to assist people to start groups. Newsletter, conferences, information and referrals.
Oxalosis and Hyperoxaluria Foundation http://www.ohf.org Support and current information for patients, families, and medical professionals in the field of primary hyperoxaluria and oxalate stone disease. Educates the public, supports research. Newsletter, information and referrals, phone support, pen pals, conferences and funds research. Yearly dues: $25/individual; $50/professional; $100/business.
National Association for the Relief of Paget's Disease http://www.paget.org.uk Offers support to persons with Paget's disease. Aims to raise awareness of this disorder through newsletter and publications. Sponsors research. Information and referrals, phone support, literature. Guidelines avaiable for starting similar groups.
Panhypopituitarism Division of MAGIC http://www.magicfoundation.org Provides support for families affected by panhypopituitarism. Newsletters, updated medical information, phone support, annual convention and Kids Program. Online assistance available finding or forming local support groups. Dues US $35/yr, Canada $40/yr, international $45/yr.
Recurrent Respiratory Papillomatosis Foundation http://www.rrpf.org Networking for families affected by recurrent respiratory papillomatosis (RRP) and interested professionals. Newsletter, phone support, online support and referrals to local support groups.
The Romberg's Connection http://www.geocities.com/HotSprings/1018/ Offers mutual support for persons, and their families, affected by Parry-Romberg Syndrome (aka progressive facial hemiatrophy or Rombergs syndrome). Parry-Romberg syndrome is a rare disorder causing atrophy to usually one half of the face.
Precocious Puberty Support Network http://www.magicfoundation.org Network and exchange of information for children who are experiencing precocious puberty, and their families. Information and referrals, phone support, pen pals, annual convention, conferences, literature. Newsletter ($35/US, $40 Canada, $45 overseas/year).
International Pemphigus Foundation http://www.pemphigus.org Provides support and information on pemphigus and related autoimmune blistering dieseases for patients, families, friends, and the medical community. Computer listserv. Literature, newsletter, information and referrals, advocacy and phone support. Computer support group and listserv.
Peter's Anomaly Support Group http://www.petersanomaly.org Support for families of children with Peter's anomaly. Message board and forum. Many useful links.
Pierre Robin Network http://www.pierrerobin.org Support and education for individuals, parents, caregivers and professionals dealing with Pierre Robin Syndrome or Sequence. Literature, newsletter, information, advocacy. Online email group and bulletin board. Outreach committee comprised of families available worldwide to correspond via mail, phone, in-person or email.
Pituitary Network Association http://www.pituitary.org Mutual support for persons with all types of pituitary disorders and diseases. Promotes early diagnosis, medical and public awareness, and continued research to find a cure. Phone support, newsletter, resource guide, patient conferences, information and referrals.
PLS Friends http://www.geocities.com/freyerse Opportunity for persons with primary lateral sclerosis, a progressive neuromuscular disease, to share information and support via an online discussion group. Fosters support and an exchange of ideas among PLS patients, families, caregivers and health care professionals.
Post-Polio Health International http://www.post-polio.org Information on late effects of polio for survivors and health professionals. International conferences. Quarterly newsletter (part of membership over$30), annual directory ($8). Guidelines and workshops for support groups. Handbook on late effects ($11.50).
American Porphyria Foundation http://www.porphyriafoundation.com Supports research, provides education and information to the public, patients and physicians, networks porphyria patients and support groups. Quarterly newsletter, pen pal program, telephone network. Group guidelines available. Donation $35/yr.
Canadian Association for Porphyria http://www.cpf-inc.ca Mission is to improve the quality of life for people affected by porphyria. A group of rare genetic disorders characterized by disturbances of porphyria metabolism. Offers programs of support, awareness, education, service and advocacy. Promotes awareness of porphyria through educational literature, articles, newsletters, information and referrals. Offers support groups and advocacy. Assistance in starting groups. Encourages and supports research.
Periodic Paralysis Association http://www.periodicparalysis.org Provides information and support to individuals with periodic paralysis and non-dystrophic myotonias (disorders characterized by episodic paralysis and weakness), their families and health care professionals. Offers links to online specialist referrals, private e-mail listserv, Ask-the-experts, online newsletter, and patient advocacy.
Prader-Willi Syndrome Association http://www.pwsausa.org Support and education for anyone impacted by Prader-Willi syndrome. Bi-monthly newsletter. Membership dues $35. Many publications available. Chapter development kits available.
National Association for Pseudoxanthoma Elasticum http://www.pxenape.org Support, education, research and advocacy for persons with pseudoxanthoma elasticum (PXE), and their families, interested others, and professionals. Newsletter, information, phone support. Donations appreciated and tax deductible.
PXE International, Inc. http://www.pxe.org Initiates, funds and manages research, supports patients and educates clinicians. Offers support groups, listservs, phone and mail contacts, literature and semi-annual newsletter. Offers assistance in starting similar group.
Young Survival Coalition http://www.youngsurvival.org Support and education for young women (age 40 and under) living with a diagnosis of breast cancer. Addresses the concerns and issues that are unique to young women and breast cancer (such as higher mortality rates, fertility issues and early menopause). Information, resources, advocacy, one-to-one Point of Contact Program and online support forums.
Cure PSP (Society for Progressive Supranuclear Palsy, Inc.) http://www.curepsp.org Provides support and advocacy for patients with progressive supranuclear palsy, and their families. Offers newsletter, information and referrals, phone support, conferences, listserv, educational materials, assistance in starting support groups.
National Psoriasis Foundation http://www.psoriasis.org Support and information for people who have psoriasis and psoriatic arthritis, their families and friends. Education to increase public awareness of these disorders. Fund-raising for research. Quarterly magazine for members. Educational booklets, and physician directory. Offers online message board and chatrooms.
Jewish Guild for the Blind, The http://www.jgb.org Support for persons of all ages who are visually impaired, blind and those with additional disabilities. Telephone support network brings together parents from around the country whose children have the same condition (retinopathy of prematurity, retinitis pigmentosa, cortical visual impairment, Leber's congenital amaurosis and Stargardt disease) to speak with parents in the same situation. Newsletter, literature and how-to materials for starting a support group available on the website or in hard copy.
National Organization for Rare Disorders http://www.rarediseases.org Information on support groups and resources for persons with any type of rare disorder. Literature, information and referrals. Advocacy for orphan diseases. Their "Networking Program" links persons or families with the same disorder for support.
STARS-US (Syncope Trust And Reflex Anoxic Seizures) http://www.stars-us.org Network of parents and sufferers of syncope and reflex anoxic seizure (characterized by temporary heart stoppage and a seizure-like response to any unexpected stimuli), also known as Stephenson's seizure, white breath holding or pallid infantile syncope. Newsletter, networking, literature, phone support, conferences, information and referrals. Online e-bulletin and moderated message board. Support system and education for sufferers, their families, medical community and general public. Offers assistance in starting local chapters. Dues $25/yr.
Reflex Sympathetic Dystrophy Syndrome Association http://www.rsds.org Aims to meet the practical and emotional needs of reflex sympathetic dystrophy syndrome (aka complex regional pain syndrome) patients and their families. RSDS is a disabling disease involving nerve, skin, muscle, blood vessels and bones. The only common symptom in all patients is pain. Promotes research, educates public and professionals. Quarterly newsletter. Group development guidelines available.
Restless Legs Syndrome Foundation http://www.rls.org Promotes awareness and information about restless legs syndrome. Offers network of support and educational groups nationwide. Publishes a free information booklet. Members receive a quarterly newsletter.
International Rett Syndrome Foundation http://www.rettsyndrome.org For parents, interested professionals and others concerned with Rett syndrome. Provides information and referral, peer support among parents, and encourages research. Quarterly newsletter. Dues free/corresponding partner; $30/active partner; $40/international, $125/organization.
National Reye's Syndrome Foundation http://www.reyessyndrome.org Devoted to spreading awareness of Reye's syndrome, a disease affecting the liver and brain which affects people of all ages and races. Provides support, information and referrals. Encourages research. Representatives are usually a parents, sibling or survivor, but is open to any interested person.
Robinow Syndrome Foundation http://www.robinow.org Aim is to support, locate, and educate persons affected by Robinow syndrome, (also known as fetal face syndrome) a very rare genetic dwarfing syndrome. Online support and newsletter, bi-annual conventions, family networking.
Rubinstein-Taybi Parent Group USA Mutual support, information and sharing for parents of children with Rubinstein-Taybi syndrome. Phone contact, parent contact list, chat room and listserv.
Scoliosis Association, Inc. http://www.scoliosis-assoc.org Information and support network for scoliosis patients and parents of children with scoliosis. Establishes local patient and parent self-help groups. Encourages school screening programs. Supports research. Newsletter. Membership contribution $20. Guidelines for starting chapters.
National Scoliosis Foundation http://www.scoliosis.org Dedicated to helping children, parents, adults and health care providers deal with the complexities of spinal deformities such as scoliosis. Whether the issue is early detection and screening programs, treatment methods, pain management or patient care, NSF strives to promote public awareness, provide reliable information, encourage on-going research and educate and support the scoliosis community. Bi-annual newsletter, information packets, pen pals, conferences, and phone support. Assistance in starting local groups.
Shwachman Diamond Syndrome Foundation http://www.shwachman-diamond.org Patient advocacy organization whose goals are to support research towards a cure and improve medical management of symptoms. Links families for emotional support and offers the most current medical information available which is provided through the knowledge and cooperation of our professional medical advisory board.
Sjogren's Syndrome Foundation, Inc. http://www.sjogrens.org Information and education for Sjogren's syndrome patients, families, health professionals and the public. Opportunities for patients to share ways of coping. Stimulates research for treatments and cures. Newsletter "Moister Seekers," chapter development guidelines, video tapes, annual symposium and Sjogren's handbook.
Families of SMA (Spinal Muscular Atrophy) http://www.fsma.org Funding of research, support and networking for families affected by spinal muscular atrophy types I, II, III, adult onset and Kennedy's. Educational resources, group development guidelines, quarterly newsletter, pen pals, phone support and videotapes. Online message boards and kids corner support.
PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) http://www.prisms.org Parent-to-parent program offering support, advocacy and education for families affected by Smith-Magenis syndrome. Information, referrals, literature, phone support and newsletter. Dues $30.
Sotos Syndrome Support Association http://www.well.com/user/sssa Provides mutual support and information for families of children with Sotos syndrome. Newsletter, information and referrals, phone support, pen pals and annual conferences.
National Spasmodic Torticollis Association http://www.torticollis.org Advocacy group providing information and support to spasmodic torticollis patients and their families. Network of support groups and volunteers on-call to talk with other patients. Quarterly magazine, annual symposium. Educates the public and the medical community. Supports research. E-mail support.
National Spasmodic Dysphonia Association http://www.dysphonia.org Dedicated to advancing medical research into the causes, and treatments for, spasmodic dysphonia. Promotes physician and public awareness of the disorder through outreach, and sponsoring support activities for people with SD and their families through educational materials, annual symposiums, support groups, and on-line resources. The NSDA is the only organization that is entirely dedicated to Spasmodic Dysphonia. Offers assistance in starting similar groups. Newsletter.
Stevens Johnson Syndrome Foundation http://www.sjsupport.org Provides to the public and medical communities information on adverse allergic drug reactions. Aim is to quicken diagnoses to avoid permanent damage. Literature, phone support, chatroom support group, online moderated disussion group, group information and referrals.
Spastic Paraplegia Foundation, Inc. http://www.sp-foundation.org Offers support and information to those affected by primary lateral sclerosis and hereditary spastic paraplegia. Supports research. Offers regional and email support groups, online chat group, newsletter and information.
Stickler Involved People http://www.sticklers.org Network that offers support and education for persons affected by Stickler syndrome. This genetic disorder affects connective tissues, including the joints, eyes, palate and hearing. Phone support, annual conference, literature, DVD, quarterly newsletter, online listserv, information and referrals.
The Sturge-Weber Foundation http://www.sturge-weber.com Mutual support network for families and professionals involved with Sturge-Weber syndrome, Port Wine Stains or Klippel-Trenauney syndrome. Disseminates information, funds and facilitates research. Newsletter, E-news monthly, phone support, pen pals, active e-mail support group. Educational materials for schools, parents and clinicians. Biennual conference.
American Syringomyelia Alliance Project http://www.asap.org Support, networking and information for people affected by syringomyelia and chiari malformation, and their families and friends. Newsletter, phone support, pen pals, conferences. Online message board and chat rooms.
Takayasu's Arteritis Association http://www.takayasus.org Education and support for persons with Takayasu's arteritis (an inflammation of the large elastic arteries and aorta), their families and health professionals. Network program, information, phone and on-line support, literature, newsletters, reaearch conferences and resources.
National Tay-Sachs and Allied Diseases Association http://www.ntsad.org Provides support services and information to individuals of all ages and families affected by these disorders as well as caregivers and the public at large. The strategies for achieving these goals include public and professional education, research, genetic screening, support services (i.e. peer support group for parents, grandparents, extended family members) and advocacy. Dedicated to the treatment and prevetion of Tay-Sachs, Canavan and related genetic diseases. Translations available in Spainish, Russian, Hebrew and French.
EA/TEF Child and Family Support Connection, Inc. http://www.eatef.org Provides information and support for families of children with esophageal atresia and tracheoesophageal fistula. Offers pamphlets, brochures and discussion forum.
The Vater Connection http://www.vaterconnection.org Provides information and support to families whose children have VATER Association (vertebrae problems, anal anomalies, trachea problems, esophagus problems, radius and/or renal problems). Newsletter. Bi-annual conferences. Online bulletin board.
Homosexuals Anonymous Christian fellowship of men and women, who have chosen to help each other to live free from homosexuality. Group support through weekly meetings. Online groups, newsletter and chapter manual.
Tourette Syndrome Association http://www.tsa-usa.org Dedicated to identifying the cause, finding the cure, and controlling the effects of Tourette syndrome through education, research and service. Provides support services to families and professionals to enable patients to achieve optimum development. Chapter development guidelines, newsletter. Dues $45.
TRIO (Transplant Recipients International Organization) http://www.trioweb.org Works to improve the quality of life of transplant candidates, recipients, donors, and their families. TRIO serves its members in the areas of: donor awareness, support, education, and advocacy. Annual conference, bi-monthly newsletter, monthly membership update, support network, chapter development assistance. Offers information online finding local chapters.
Tall Clubs International http://www.tall.org Social support for tall persons (men at least 6'2", women at least 5'10"). Also advocacy for clothing and other special needs of tall people. Skywriters and TALLrific for persons under 21. Group development guidelines, information, referrals, conferences, newsletters and social gatherings.
Trigeminal Neuralgia Association http://www.endthepain.org Provides information, mutual support and encouragement to persons with trigeminal neuralgia (aka tic douloureux), and their families. Helps to reduce the isolation of those affected. Aims to increase public/professional awareness, and promote research into cause and cure. Quarterly newsletter. Phone support, educational information, patient advocacy.
SOFT (Support Organization For Trisomy) http://www.trisomy.org Support and education for families of children with trisomy 18 and 13 and related genetic disorders (including trisomy 9). Education for professionals. Quarterly newsletter. Pen pal program, phone network. Regional gatherings. Annual international conference, booklets. Online information on finding a local support group. Dues $25.
Tuberous Sclerosis Alliance http://www.tsalliance.org Dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected. Provides research, support and education among individuals, families and the helping professions. Newsletter, peer networking programs, conferences, information.
Oley Foundation, Inc. http://www.oley.org Provides information and psychosocial support for home nutrition support (intravenous or tube-feeding) patients, their families, caregivers and professionals. Programs include bi-monthly newsletter, national network of volunteers providing patient support, annual summer conference, regional meetings, patient-to-patient networking and information clearinghouse.
Turner Syndrome Support Network http://www.magicfoundation.org Network and exchange of information for parents of children with Turner's syndrome. Phone support, pen pals, conferences, literature, annual convention, newsletter, information and referrals. Membership:$35 US; $50 Canada; $60 oversees.
Transverse Myelitis Association http://www.myelitis.org/ Offers support and education to persons with transverse myelitis and other neuroimmunologic diseases of the central nervous system (e.g., Acute Disseminated Encephalomyelitis (ADEM), Optic Neuritis, and Neuromyelitis Optica (Devic's disease)and their families. Networks families together for support. Provides literature, newsletter, membership directory. fundraising, conducts symposia and workshops. Investigates, advocates and supports research and treatment efforts. Provides a support forum for communication. Bulletin board.Assists in development of local support groups. Fundraisers for research. Conducts symposia and workshops.
Kids with Food Allergies http://www.kidswithfoodallergies.org Organization dedicated to fostering optimal health, nutrition and well-being of children with food allergies by providing a caring support community and education for their families and caregivers. Opportunity for parents to connect with one another for food allergy management strategies, to share personal experiences and to connect with one another for emotional support. Newsletter, recipes, resources, support forums and allergy alerts.
International Emetophobia Society Forums http://www.emetophobia.org Support for people who suffer from emetohobia - an irrational fear of vomiting, to help them with their fears and share their experiences with others. Several topic are addressed, such as: social isolation, obession, travel issues, morning sickness and eating strategies.
Pandora's Aquarium, Inc. http://www.pandorasaquarium.org Provides support, education and resources to sexual violence survivors and their supporters. Operates an online support group, message board and chatroom for rape and sexual abuse survivors. Offers a Sexual Assault Lending Library, which lends materials on sexual violence and recovery, free of charge. Newsletter, literature and national conference.
National Urea Cycle Disorders Foundation http://www.nucdf.org Links families, friends and professionals who are dedicated to the identification, treatment and cure of urea cycle disorders, a genetic disorder causing an enzyme deficiency in the urea cycle. Networks families together for support, educates professionals and public, and supports research. Phone support, literature, newsletter. Dues $35.
PsychCentral Dissociative Disorders Forum http://forums.psychentral.com/ (under the Provides mutual support for persons with dissociative identity disorder (DID, formerly known as multiple personality disorder) and other dissociative disorders. Members share ideas and pool information on resources through the Forum's message boards.
National Vaccine Information Center http://www.nvic.org Support, information and advocacy group for parents whose children were adversely affected by vaccines. Advocates for safety reforms in the mass vaccination system and safer vaccines. Promotes education for parents and professionals. Various literature. Dues $25/yr.
Velo-Cardio-Facial Sydrome Educational Foundation, Inc. http://www.vsfsef.org Support and resource network for families coping with velo-cardio-facial syndrome (aka Shprintzen syndrome, 22q11 Deletion Syndrome). Provides information, literature, conferences, and assistance in starting local groups. Uses a listserv.
International Ventilator Users Network http://www.post-polio.org/ivun Information sharing by ventilator users and health care professionals experienced in home mechanical ventilation. Annual directory ($12). Quarterly newsletter (free for membership dues of $30).
Vestibular Disorders Association http://www.vestibular.org Information, referrals and support for people affected by disorders caused by inner ear problems. Public education, group development assistance, quarterly newsletter, library of resources, phone support network. Distributes several videotapes and publishes 70 documents, including full-length books on Meniere's disease and benign paroxysmal positional vertigo (BPPV).
VHL Family Alliance (Von Hippel-Lindau Syndrome) http://www.vhl.org Opportunity for families affected by Von Hippel Lindau to share their knowledge and experiences with each other and the medical community. Goal is to improve diagnosis, treatment and quality of life for VHL families. Newsletter, phone support, education, tissue bank and handbook. Literature available in Spanish, German, French, Japanese and other languages. Funds research. Assistance in starting local chapters.
National Vulvodynia Association, Inc. http://www.nva.org Provides information and support to women with vulvodynia. Educates health care professionals and the public about this condition. Newsletter, literature, information and referrals, phone support and advocacy.
International Waldenstrom's Macroglobulinemia Foundation http://www.iwmf.com Provides support and information to persons with Waldenstrom macroglobulinemia, their families and caregivers. Information and referrals, phone support, conferences, newsletter, and literature. Regular support group meetings. Provides assistance in starting new groups.
Williams Syndrome Association http://www.williams-syndrome.org To encourage research related to Williams syndrome, find and support families with Williams syndrome, and share information among parents and professionals re: educational, medical and behavioral experiences. Newsletter.
XLH Network http://www.xlhnetwork.org Volunteer organization offering support and information for families affected by x-linked hypophosphatemia (aka x-linked hypophosphatemic rickets, familial hypophosphatemic rickets, or vitamin d resistant rickets). Also open to those affected by similar disorders including autosomal dominant hypophosphatemic rickets and tumor-induced osteomalacia. Open to interested professionals dedicated to understanding in terms of support, research and developing new treatments. Raises awareness, exchanges and disseminates information. Offers an online brochure and members listserv.
MHE and Me: A Support Group for Kids with MHE http://www.mheandme.com Provides peers and a supportive community to children suffering from multiple hereditary exostosis (a genetic disorder in which benign cartilage-capped tumors grow from growth plates of long bones or surfaces of flat bones). Develops information and literature to assist children and their families in dealing with the disease. Offers free Bumpy Bone Club membership to patients and their sublings. Provides We Care packages to children having surgery and their siblings. Advocacy, information and referrals, phone and e-mail support.
The MHE Coalition http://www.mhecoalition.org Support and information for persons and their families affected by multiple hereditary exostosis, a skeletal disorder characterized by the formation of abnormal bony growths. Promotes and encourages research to find the cause, treatment and cure. Newsletter, networking, literature, advocacy, online groups, information and referrals, phone support and pen pals.
Polycystic Ovarian Syndrome Association http://www.pcosupport.org Provides emotional support and information for women with polycystic ovarian syndrome. Provides information on various treatments and diagnosis. Newsletter, phone support, literature, conferences, regional symposiums, and advocacy. Online chats and e-mail lists. Assistance in starting local groups. Dues $40.
National Multiple Sclerosis Society http://www.nationalmssociety.org (Bilingual) Funds research in multiple sclerosis, provides information and referrals, support groups for patients and families, professional education and newsletter.
National Association to Advance Fat Acceptance (NAAFA) http://www.naafa.org Fights size discrimination and provides fat people with the tools for self-empowerment. Public education regarding obesity. Provides a forum for peer support and activism. Dues $35 (includes newsletter), educational materials, and annual convention. Special interest groups include: youth, families, gays, diabetics, men, women, sleep apnea, military, mental health professionals, and couples.
SibNet http://groups.yahoo.com/group/SibNet Listserv for and about adult brothers and sisters of people with special health, developmental and emotional needs. Opportunity for young adults and adult brothers and sisters to share information and discuss issues of common interest. Subscribers can connect with their peers, seek information about local services, create connections for their siblings and discuss the proper policies agencies should have toward brothers and sisters.
MOPS, International (Mothers of Pre-Schoolers) http://www.mops.org A non-denominational Christian support groups for mothers with children from infancy to 6 years old. MOPS groups meet in churches throughout the U.S., Canada, and 15 other countries. Assistance in starting local groups.
MAD DADS, Inc. (Men Against Destruction Defending Against Drugs and Social-disorder) http://www.maddads.com Grassroots organization of fathers aimed at fighting gang- and drug-related violence. Provides family and community activities and leadership, community education and mobilization, speaking engagements regarding goals and objectives and chapter formation. They present themselves as "surrogate fathers" who listen to and care about street teens in neighborhoods. Provides assistance in starting chapters in hard-to-reach neighborhoods and communities. Also provides memberships for kids, mothers and grandparents.
Birth Defect Research for Children http://www.birthdefects.org Provides information about birth defects, as well as services and resources that may be helpful to families. Links parents of children with similar birth defects for mutual sharing and support. Sponsors National Birth Defect Registry. Maintains database on medical/scientific literature and research. Monthly electronic newsletter.
Washington PAVE (Parents Are Vital in Education) http://www.washingtonpave.org Parent-directed organization to increase independence, empowerment and opportunities for special needs children and their families through training, information, referrals and support. Newsletter, lending library of resources, networking between parents through internet, workshops on many isssues, phone support and conferences on speical education issues. Has special program that foucused on military family concerns.
MUMS National Parent-to-Parent Network http://www.netnet.net/mums/ Mutual support and networking for parents or care providers of children with any disability, rare disorder, chromosomal abnormality or health conditions using a database of over 23,000 families from 54 countries, covering 3500 disorders, very rare syndromes or undiagnosed conditions. Provides referrals to support groups and assistance in starting groups. Newsletter ($15 parents/$25 professionals). Matching services $5. Hyperbaric Oxygen Therapy as a Treatmet for Brain Damage packet $25 USA/ $35 other contrues. Other literature available.
NATHHAN (National Challenged Homeschoolers) http://www.nathhan.com Christian, non-profit organization encouraging families with specials needs, particularly those who home educate. Bi-annual magazine, lending library, family phone book, phone support, information and referrals. Program for partents of special needs pre-borns. Dues $25/yr.
National Organization of Mothers of Twins Clubs, Inc. http://www.nomotc.org/ Opportunity for parents of multiple births (twins, triplets, quads) to share information, concerns and advice on dealing with their unique challenges. Literature, quarterly newspaper ($15/yr.), group development guidelines, educational materials, special needs and bereavement support, pen pal program. Membership through local chapters or as individual affiliate members.
Human Growth Foundation http://www.hgfound.org Local chapters provide members the opportunity to meet other parents of children with growth related disorders. Mutual sharing of problems, research and public education. Monthly and quarterly newsletter. Parent-to-parent support and networking program. Annual conference. Offers Internet support list for parents and adults.
MAGIC Foundation for Children's Growth http://www.magicfoundation.org Provides public education and networking for families of children with growth-related disorders. MAGIC Foundation has 11 divisions: growth hormone deficiency, congenital adrenal hyperplasia, Turner's syndrome, precocious puberty, McCune Albright syndrome, panhypopituitarism, genital reproductive anomilies in children, rare disorders including hypophosphatasia, adult growth hormone deficiency, IGF-1 deficiency, Russell Silver syndrome, hypothyroidism, and septo optic dysplasia. Information, referrals, phone support, pen pals, annual convention and conferences. Newsletters for children and adults.
Growth Hormone Deficiency Support Network http://www.magicfoundation.org Network and exchange of information for families of children with growth hormone deficiency disorders. Information and referrals, phone support, pen pals, conferences, literature, annual convention and membership newsletter ($35/US, $40/Canada, $45 oversees).
Depressed Anonymous http://www.depressedanon.com 12-step program to help depressed persons believe and hope they can feel better. Newsletter, phone support, information and referrals, workshops, conferences and seminars. Information packet. Assistance in starting a similar group available.
Depression and Bipolar Support Alliance (DBSA) http://www.DBSAlliance.org Mutual support and information for persons with depression and bipolar disorder, and their families. Provides education on the nature of depressive illnesses. Advocacy for research and improved access to care. Annual conference, chapter development guidelines and quarterly newsletter.
Postpartum Support International http://www.postpartum.net Coordinators in 48 states; 25 countries. Goal is to increase the awareness of the emotional changes women often experience during pregnancy and after the birth of a baby. Information on diagnosis and treatment of postpartum depression. Provides education, advocacy and annual conference. Encourages formation of support groups. Helps strengthen existing groups. Phone support, referrals, literature and newsletter.
National Organization of Single Mothers, Inc. http://www.singlemothers.org Networking system helping single mothers meet the challenges of daily life with wisdom, dignity, confidence and courage. Information and referrals. Dues $15.97/yr. Assistance in starting new groups.
Nicotine Anonymous World Services http://www.nicotine-anonymous.org 12-Step. Program for people who want to recover from nicotine addiction and live free of nicotine in all forms. Welcomes all, including persons using cessation programs and nicotine withdrawal aids.
Speak Easy International Foundation, Inc. Self-help group for adult and adolescent stutterers. Must have speech dysfunction or phobia. Offers assistance starting new groups. Phone network, peer counseling and newsletter. Dues $85/yr.
Toastmasters International http://www.toastmasters.org Mutual help for people to improve speaking leadership skills, express themselves more effectively and to gain confidence. For those who are hesitant to speak before an audience. One time new membership kit $20. Dues $54/yr. Leadership training. Monthly magazine.
National Stuttering Association http://www.WeStutter.org Provides information about stuttering. Self-help chapter meetings provide supportive environment where people who stutter can learn to communicate more effectively. Network of groups. Referrals, advocacy, monthly newsletter and group development guidelines. Dues $35; $20/senior/student/low income.
International Foundation for Stutterers, Inc. Aims to eliminate stuttering through speech therapy in conjunction with support groups. Education for public and professionals about stuttering and support. Newsletter, speakers, phone help system and guidelines on forming support groups.
National Stroke Association http://www.stroke.org Dedicated to reducing the incidence and impact of stroke through prevention, medical treatment, rehabilitation, family support and research. Professional publications, Stroke Smart magazine, information and referrals to local groups. Guidance for starting stroke clubs and groups.
Corstone http://www.attitudinalhealing.org (formerly The Center for Attitudinal Healing)Emotional and spiritual support programs for children, adolescents and adults facing their own, or a family member's life-threatening illness, long-term diagnosis, or bereavement. Offers guidelines for starting a local group. Also open to anyone wishing to change their perception of their lives. Workshops and training. Website contains information on centers and contacts around the world.
Joubert Syndrome Support Group http://health.groups.yahoo.com/group/joubertsyndrome/ Support for parents that have children diagnosed with Joubert syndrome (a rare, genetic disorder that affects the area of the brain that controls balance and coordination). Forum for sharing stories, therapy experience, behavioral and social issues.
Quintessential Careers http://quintcareers.com/job_club.html Website includes "For Networking and Support, Join or Start a Job Club" article which provides helpful information and links for job seekers - including links which provide information on local job support groups, accessible by state. If no local support group exists, the article offers practical suggestions on how anyone can join with others to start and run their own job club self-help support group.
ACOR (Association of Cancer Online Resources) http://www.acor.org Click on "Mailing Lists" for over 150 e-mail support groups where patients, caregivers and survivors share their experiences with many different cancers: lung, colon, pancreatic, melanoma, endometrial, esophagel, leiomyosarcoma, male breast, metastatic, myeloproliferative disorders, mycosis fungoides, various sarcomas, stomach, testicular, thyroid. pediatric, retinoblastoma, rare, etc., as well as possible related issues such as fatigue, finance, depression, bone marrow transplant, facing death of a loved one, and other situations.
Interstitial Cystitis Heroes http://www.revolutionhealth.com/groups/interstitial-cystitis-heroes Support for all who suffer from interstitial cystitis, a painful bladder disease. A place to come together to talk about symptoms, treatments and to encourage one another.
9 to 5, National Association of Working Women http://www.9to5.org (Blingual) Support, advocacy and legislative assistance on issues that affect women who work. Job problem counselors can advise women on how to make changes on their jobs. Dues $25. Phone support, conferences, newsletters. Group development guidelines.
National Gulf War Resource Center, Inc. http://www.ngwrc.org Supports the efforts of grassroot organizations that assist veterans affected by the Persian Gulf War illnesses. Also provides advocacy and support for Gulf War veterans, veterans of Afghanistan and Iraq and their families. Conducts research into the causes of Gulf War syndrome. Self-help guides, media assistance, provides congressional testimony, advocacy, literature, information and referrals.
National Organization for Women http://www.now.org NOW is an action organization that seeks social, political, economic and legal equity between women and men through grassroots organizing, lobbying, litigation, protests and demonstrations. Educational meetings, national newsletter and chapter development guidelines.
Business and Professional Women/USA http://www.bpwusa.org Organization comprised of working women, to promote workplace equity and provide networking opportunities. Lobbying efforts, tri-annual magazine, periodic publications, resource center and grassroots community action projects. Annual national convention. Local group information available online.
Black Women's Health Imperative http://www.blackwomenshealth.org Grassroots organization aimed improving the health of Black women by providing wellness education, services, self- help group development, leadersip development, health information and advocacy. Assists in the development of local affiliate groups. Self-help brochure, quarterly newsletter, and annual news magazine. Membership dues vary.
Endometriosis Association http://www.endometriosisassn.org Offers group support to those affected by endometriosis. Educates the public and medical community about the disease. Funds and promotes research projects. Newsletters, books, literature, support group information, teen programs and network. Brochures in 29 languages. Chapter development guidelines. Online support group, crisis call listeners and e-mail support.
National Association For Continence (NAFC) http://www.nafc.org Dedicated to improving the quality of life of people with incontinence by providing support and information about the causes, prevention, diagnosis, treatments and management alternatives for incontinence. Offers telephone support network, moderated message board and listserv. Newsletter, literature (some available in Spanish), regional conferences, information and referrals. Membership dues $25/yr.
Hemifacial Spasm Association http://www.hfs-assn.org An international support community of individuals who had or are presently suffering from hemifacial spasm (HFS) and who are eager to provide information, understanding and support to other individuals and their families when coping with hemifacial spasm.
Because I Love You: The Parent Support Group (B.I.L.Y.) http://www.becauseiloveyou.org Self-help groups for parents who have children of all ages with behavioral problems such as truancy, substance abuse, or other forms of defiance of authority. Focus is on parents getting back their self-esteem and control of their home.
Conduct Disorders Parent Message Board http://www.conductdisorders.com Support for parents living with a child with one of the many defiant behavior disorders including: attention deficit hyperactivity disorder, oppositional defiance disorder, conduct disorder, depression and substance abuse. Parents with children of all ages welcome.
Families for HoPE, Inc. http://www.familiesforhope.com Offers support and education to families of infants and children diagnosed with holoprosencephaly (HPE), a congenital brain malformation. Offers support for all stages of the HPE journey.
TRUE (Transplanted to Resolve Urea-cycle Enzyme-deficient) Kids http://disc.yourwebapps.com/Indices/153415.html Mutual support and information for families of transplanted children with urea cycle disorder.
Lightning Strike and Electric Shock Survivors International, Inc. http://www.lightning-strike.org Mutual support for survivors of lightning or electric shock, their families and families of non-survivors. Studies the long-term after-effects. Phone support, annual conferences, help in starting support groups, newsletter, information and referrals. Books and tapes available.
International Association for Near-Death Studies http://www.iands.org Support and interest groups for anyone who has had a near-death or similar experience or who has personal or professional interest in such experiences. Newsletter, group development guidelines.
New England Patients' Rights Group Mutual support for healthcare consumers, many of whom are suffering because of deficiencies or negligence in the system. Advocates for consumer empowerment, quality, accurate information, informed consent, insurance needs, patients' rights and protection. Newsletter.
PRIDE (from Prostitution to Independence, Dignity and Equality) http://www.everyfamilymatters.org/pride Provides PRIDE support groups and other services to assist women and children in escaping the sex industry (including prostitution, pornography and stripping).
A.L.S. Association http://www.alsa.org Dedicated to finding the cause, prevention and cure of amyotrophic lateral sclerosis. Aims to enhance the quality of life for ALS patients and their families. Newsletter 3x/yr and chapter development guidelines available.
Amyloidosis Support Groups, Inc. http://www.amyloidosissupport.com Support for patients, caregivers, families, those who lost loved ones to amyloidosis and friends of amyloidosis patients. Also deals with multiple myeloma, peripheral neuropathy, familial amyloidosis and protein misfolding. Telephone support network, pen pal program, educational materials, national conference, advocacy, information and referrals. Online mutual aid activities include message board and mailing list. Assistance in starting and maintaining groups.
Molesters Anonymous Provides support with anonymity and confidentiality for men who molest children. Use of "thought stoppage" technique and buddy system. Groups are initiated by a professional but become member-run. Group development manual ($9.95).
Survivors of Incest Anonymous http://www.siawso.org 12-step program for men and women 18 yrs. or older who have been victims of child sexual abuse and want to be survivors. Newsletter ($15/yr), literature ($30 for 13 pieces), assistance in starting groups, volunteer information and referral line, speakers bureau. Send self-addressed stamped envelope when writing (include a donation if possible).
Incest Survivors Anonymous http://www.lafn.org/medical/isa Offers 12-Steps/12-Traditions principles and tools of recovery. Fellowship of men, women and teens who meet to share their experience, strength and hope, so that they may recover from their incest experiences and break free to a new peace of mind. Offers several packets of information, pen pals, I.S.A. E-mail Family Letter, CDs and cassettes. Not open to initiators, pedophiles, child molesters or satanists. Provides assistance in starting I.S.A. groups. When writing send a self-addressed stamped envelope (2 stamps).
Incest Resources, Inc. http://www.incestresourcesinc.org Provides educational and resource materials for female and male incest survivors and the professionals working with them. International listing of survivor self-help groups, manual for starting survivor self-help group, and many other resources. For complete information send self-addressed envelope with two 1st class stamps.
Adult Children of Multiplicity Mission is to provide companionship and back up support for adult children ages (18+) who had or have a parent with Multiple Personality Disorder or Dissociative Identity Disorder (MPD/DID).
Male Survivor: National Organization Against Male Sexual Victimization http://www.malesurvivor.org Information and referrals for male survivors of sexual assault and the professionals working with them. Conference every two years, referrals to local resources, periodic regional retreats offered, newsletter, online bulletin board and chatroom.
Crohn's and Colitis Foundation of America http://www.ccfa.org Support groups and educational programs for people with Crohn's disease or ulcerative colitis, as well as their family and friends. Membership benefits include a national magazine, newsletter, discounts on books and brochures. Dues $30yr./individual; $60yr./family. To find support groups on website: click on "chapters & events"; then select your state; then click on the "support groups" icon.
International Foundation for Functional Gastrointestinal Disorders http://www.iffgd.org Educational and research organization that provides support, information, and assistance for people affected by functional gastrointestinal disorders, IBS, GERD, and bowel incontinence. Publishes quarterly journal addressing digestive disorders in adults and children. Many other fact sheets and educational publications are available.
Autism Society of America http://www.autismsocietyofamerica.org Organization of parents, professionals and citizens working together via education, advocacy and research for children and adults on the autism spectrum. Magazine, searchable database and annual conference.
Autism Network International (ANI) http://www.ani.ac Organization run by and for autistic people. Provides peer support and tips for coping and problem-solving. Information and referrals. Advocacy, education, retreats/conferences. Online listerv.
Brain Tumor Society http://www.tbts.org Committed to finding a cure for brain tumors. Improves the quality of life for brain tumor patients, survivors and caregivers through support programs, research, education, and services. Maintains a database of brain tumor support groups, funds research, free newsletter, e-newsletter, comprehensive resource guide and brain tumor Fact Sheets.
American Brain Tumor Association http://www.abta.org Dedicated to supporting brain tumor patients, eliminating brain tumors by funding and encouraging research. Provides pen pal program, free patient education, resource information, newsletter, publications and resource listings. Support group referrals and assistance in starting groups.
Acoustic Neuroma Association http://www.anausa.org Support and information for patients who have been diagnosed with acoustic neuroma, a benign tumor affecting the 8th cranial nerve. Quarterly newsletter ($40/yr), nationwide support group network, biennial national symposium, and patient information booklets.
National Brain Tumor Foundation http://www.braintumor.org Support and information for persons with brain tumors and their loved ones. Provides funding for research as well as client services for brain tumor patients and family members. Offers support group listings, quarterly newsletter, information and referrals, conferences, literature and support line. Assistance in starting and maintaining support groups.
Children's Brain Tumor Foundation, Inc. http://www.cbtf.org Provides a Parent-to-Parent Network to link parents of a child with a brain or spinal cord tumor with another parent with similar experiences for information and support. Offers free resource guide (English/Spanish), Parker's Brain Storm (a book for children), Brain Tumor Week at Camp Sunshine, newsletter, annual teleconferences (available for replay on website) and funds research.
National Association of Anorexia Nervosa and Associated Disorders, Inc. http://www.anad.org (Bilingual) Telephone hotline for victims of eating disroders, their familise and friends. Provides information on over 250+ free ANAD support groups, referrals to therapists and treatment centers that specialize in eating disorders. Quarterly newsletter. Assistance with insurance discrimination and parity issues. Free eating disorders education program for middle and high schools.
Spina Bifida Association of America http://www.sbaa.org Encourages educational and vocational development of patients. Promotes public awareness, advocacy and research. Newsletter, chapter development guidelines, national resource center, scholarships and film/videotapes.
Schizophrenics Anonymous http://www.sardaa.org/sa_main.html Organized and run by people with a schizophrenia-related disorder. Offers fellowship, support and information. Focuses on recovery, using a 6-step program, along with medication and professional help. Weekly meetings and newsletter. Provides assistance in starting and maintaining groups.
Cerebral Palsy Network http://groups.yahoo.com/group/cerbralpalsynetwork/ Aim is to make a difference in the lives of individuals with cerebral palsy and their loved ones.
National Empowerment Center http://www.power2u.org/consumerrun-statewide.html Provides contact information on all the mental health consumer/survivor statewide organizations, which in turn should be able to advise people of local self-help groups and other consumer-run services.
National Mental Health Consumers Self-Help Clearinghouse http://www.mhselfhelp.org Provides information and recovery-oriented services for mental health consumers. Assistance in self and system advocacy, on-site consultations, training and educational events. Assistance in starting groups. Maintains a database of consumer support and advocacy groups.
Vet Center Support Groups http://www.va.gov/rcs/VetCenterDirectory.htm A good number of local "Veteran Centers" have support groups (and related services) for both the combat veterans of all wars (Iraq, Afghan, Vietnam, WWII) and also their families, in order to deal with PTSD and other readjustment issues. To learn about the local vet center nearest you, go to http://www1.va.gov/directory/guide/vetcenter_flsh.asp?isFlash=1 or call 1-800-905-4675.
CONTAC (Consumer Organization and Networking Technical Assistance Center) http://www.contac.org Center for mental health consumers and consumer-run organizations nationwide that promote self-help, recovery and empowerment. Provides technical assistance for organizing and maintaining self-help groups. Conducts leadership training. Listserv, electronic library and online peer support.
BPD Central http://www.bpdcentral.com Provides links to online groups for persons dealing with a loved one with borderline personality disorder. Several mailing lists given for parents, siblings, grandparents, and others close to someone with BPD, and one group for persons with BPD themselves (BorderPD).
NLD-In-Common http://groups.yahoo.com/group/NLD-In-Common/ Opportunity for loved ones of people with non-verbal learning disabilities (NLD), adults with NLD and certain professionals to come together to communicate. Provides listserv support and information. Membership subject to approval.
American Parkinson Disease Association, Inc. http://www.apdaparkinson.org Network of 300 support groups for patients and families. Offers support, online booklets and referrals. Chapter development guidelines and quarterly newsletter. Promotes research. Fifty-nine information and referral centers nationwide.
American Association of Kidney Patients http://www.aakp.org Provides information, education and mutual support for kidney patients, their families and friends. Includes those with reduced kidney function, as well as dialysis and transplant patients. Educational materials, bi-monthly magazine and quarterly magazines, two electronic newsletters and an annual convention.
PKD Foundation for Research in Polycystic Kidney Disease http://www.pkdcure.org Funds research and provides emotional support and education for persons with polycystic kidney disease and their families. Promotes public awareness. Holds medical seminars and fund-raisers. Conferences, phone support, newsletter and assistance in starting new groups.
Turner Syndrome Society of the U.S. http://www.turnersyndrome.org Self-help for women, girls and their families affected by Turner syndrome. Increases public awareness about the disorder. Quarterly newsletter, chapter development assistance, advocacy, education and annual conference.
American Liver Foundation http://www.liverfoundation.org Dedicated to prevention, treatment and cure of hepatitis and other liver diseases through research, education and advocacy. Members include patients, families, professionals and supporters. Chapters organized and operated by lay volunteers and staff. Information on liver disease. Guidelines for starting groups. Online local chapter locator.
CLASS (Children's Liver Association for Support Services) http://www.classkids.org Dedicated to addressing the emotional, educational, and financial needs of families with children with liver disease or liver transplantation. Telephone hotline, newsletter, parent matching, literature and financial assistance. Supports research and educates public about organ donations.
ASHA's STI Resource Center http://www.ashastd.org Emotional support and education for persons with herpes and other sexually transmited infections. Referrals to HELP (herpes) support groups, which provides a safe, confidential environment in which to obtain accurate information, and share experiences with others. Support group development guidelines. Book ($26.95), Quarterly journal($25). Other materials available.
National Association of People With A.I.D.S. http://www.napwa.org Network of persons with AIDS. Sharing of information and collective voice for health, social and political concerns. Phone, mail and electronics network, speakers bureau, quarterly newsletter, free publications.
S-Anon http://www.sanon.org 12-Step group for persons who have a friend or family member with a problem of sexual addiction. Assistance available for starting groups. Conferences. Quarterly newsletter ($14).
Sexual Compulsives Anonymous http://www.sca-recovery.org Fellowship of men and women who share their experience, strength and hope that they may solve their common problem and help others to recover from sexual compulsion. Based on 12-step recovery model. Newsletter, information and referrals, phone support, conferences. Guidelines for starting similar groups.
Sexaholics Anonymous http://www.sa.org Program of recovery for those who want to stop sexually self-destructive thinking and behavior. Mutual support to achieve and maintain sexual sobriety. Telephone network, quarterly newsletter, literature and books. Guidelines to help start a similar group.
Sex Addicts Anonymous http://www.saa-recovery.org Fellowship of men and women who share their experience, strength, and hope with each other so they may overcome their sexual addiction or dependency. Open to all who share a desire to stop compulsive sexual behavior. Bi-monthly newsletter.
COSA (Codependents Of Sex Addicts) http://www.cosa-recovery.org A self-help program of recovery using the 12 steps adapted from A.A. and Al-Anon, for those involved in relationships with people who have compulsive sexual behavior. Assistance in starting new groups. Newletter ($24).
Sexual Recovery Anonymous http://www.sexualrecovery.org Fellowship of men and women who share their experience, strength and hope with each other that they may solve their common problem and help others to recover. Online referrals, literature and support also available. For those with a desire to stop compulsive sexual behavior.
NAMI Connection Support Groups http://www.nami.org Provides weekly recovery support groups for consumers living with mental illness where members learn from each others' experiences, share coping strategies and offer each other encouragement and understanding. Helps those interested in starting a group. To search for support groups on website, click on "Find Support," then "Consumer Support."
Trichotillomania Learning Center http://www.trich.org Information and support to patients, families and professionals about trichotillomania (compulsive hair pulling and skin-picking). Click on "Treatment and Resources" on top bar to see information on local support groups. For some 20 online groups, click on "Join an Online Group" under "Our Community" on left. To learn how to start a community group, click on "Get Involved" on top bar. Newsletter, information and referrals, annual retreat, conferences, phone support, pen pals and literature.
Kids With Heart http://www.kidswithheart.org Mutual support for families and adults affected by congenital or acquired heart defects. Also provides bereavement services. Matches persons together for support. Referrals to local support groups nationwide. Books. Assistance in starting groups.
CHASER (Congenital Heart Anomalies - Support, Education, Resources) Opportunity for parents of children born with heart defects to network with other parents with similar needs and concerns. Education on hospitalization, surgeries, medical treatments, etc. Newsletter, information and referral, phone support. Heart surgeon's and facilities directory.
National Society for MVP and Dysautonomia http://www.mvprolapse.com Assists individuals suffering from mitral valve prolapse syndrome and dysautonomia to find support and understanding. Education on symptoms and treatment. Newsletter, literature.
Society for Mitral Valve Prolapse Syndrome http://www.mitralvalveprolapse.com Provides support and education to patients, families and friends about mitral valve prolapse syndrome. Newsletter, phone support, literature, conferences, support group meetings. Offers group development guidelines.
RESOLVE, The National Infertility Association http://www.resolve.org Emotional support and medical referrals for infertile couples. Support groups, education for members and public. Quarterly newsletter, publications. Chapter development guidelines.
National Infertility Network Exchange (NINE) http://www.nine-infertility.org Support for persons and couples with impaired fertility and the professionals who serve them. Support system to help understand, cope and reach a resolution. Monthly educational meetings, newsletter, support groups, talk line and professional referral. Guidelines to assist others start a similar group. Dues $40/yr.
Organization of Parents Through Surrogacy http://www.opts.com Support, education and advocacy organization for families built through surrogate parenting. Members work together to address legislative bills on surrogacy. Information, networking, referrals, e-mail chatroom, phone support, literature. Dues $50/parents and surrogates; $100/professionals.
TASC (The American Surrogacy Center) http://www.surrogacy.com Cybercommunity of friends and acquaintances who have a personal interest or experience concerning surrogacy issues. Various mailing lists include: surrogate parents, egg donation, multiple miscarriages, DES daughters, sperm donation, and Mayer-Rokitanksy-Kustur-Hauser syndrome. Password protected bulletin boards, live chats and monthly virtual seminars.
Fertile Thoughts http://www.fertilethoughts.net Provides support for infertile couples through chatrooms and forums. Issues include: general infertility, primary vs. secondary infertility, over 35, overweight, grief, polycystic ovarian syndrome, male infertility, adoption and parenting.
International Association of Laryngectomees http://www.larynxlink.com Acts as a support bridge starting before laryngectomy surgery through rehabilitation. Provides practical and emotional support. Newsletter. Chapter development guidelines.
Paralyzed Veterans of America http://www.pva.org Aim is to ensure that spinal cord injured or diseased veterans achieve the highest quality of life possible. Membership is available solely to individuals who are American citizens with spinal cord dysfunction as a result of trauma or disease. Must have served on active duty and hand an other than dishonorable discharge. Information, referrals, support groups, publications, VA benefits counseling and magazine.
Breast Cancer Network of Strength http://www.networkofstrength.org (formerly known as Y-ME National Breast Cancer Organization) Mission is to decrease the impact of breast cancer, create and increase breast cancer awareness, and ensure through information, empowerment and peer support, so that no one faces breast cancer alone. Information and peer support for breast cancer patients and their families during all stages of the disease. Offers 24-hour hotlines (English and Spanish), a Latino outreach program, a Men's outmatch program for husbands and partners of women with breast cancer, support groups, teen education program, advocacy network,funding for research, publications, wig and prosthesis bank, newsletter.
AABCA (African American Breast Cancer Alliance) http://www.aabcainc.org Support, education and advocacy for POC black women and men with breast cancer, and their families. Provides information and referrals, education and a support group for patients and survivors to discuss issues and concerns. Open to anyone interested in supporting and working with this grass-roots organization.
MaleBC http://www.acor.org (once there, click on A-Z cancers, then select 'breast', then 'MaleBC') Brings men together who have been diagnosed with male breast cancer so they can share experiences, gain information and support each other.
Recovery International http://www.LowSelfHelpSystems.org Mental health self-help organization that offers weekly group peer-led meetings for people suffering from various emotional and mental conditions. Telephone and internet-based meetings also available. Principles parallel those found in cognitive-behavioral therapy. Teaches people how to change the thoughts, reactions, and behaviors that cause their physical and emotional symptoms.
International Association for Clear Thinking For people interested in living their lives more effectively and satisfactorily. Uses principles of clear thinking and self-counseling. Newsletter, group handbook, chapter development kit, audio tapes, facilitator leadership training, and self-help materials.
Emotions Anonymous http://www.emotionsanonymous.org 12-step fellowship for people experiencing emotional difficulties. Uses the 12 step program sharing experience, strength and hope in order to improve their emotional health. Books and literature available to new and existing groups. Guidelines available to start a similar group.
GROW in America http://www.growinamerica.org 12-Step groups that offers mutual help, friendship, community, education, and leadership. Focuses on recovery and personal growth. Open to all including those with mental health issues, depression, anxiety, grief, fears, etc.
It's My Heart http://www.itsmyheart.org Mutual-aid support provided via family matching program (matches families with others that have a similiar CHD diagnosis or by proximity), moderated online message board and listserv. Provides support, education and advocacy for those affected by congenital heart defects by creating alliances with fellow families, hospitals, support groups and the community. Newsletter, online support group and assistance in starting local support groups available.
CAIR (Changing Attitudes In Recovery) http://www.cairforyou.com Self-help family sharing a common commitment to gain healthy esteem. Includes persons with relationship problems, addictions, mental illness, etc. Offers netechniques and tools that lead to better self-esteem. Assistance in starting groups. Handbook ($12.95) and CDs available.
Anxiety Disorders Association of America http://www.adaa.org Promotes the diagnosis and treatment of all anxiety and related disorders including obsessive compulsive disorder, post-traumatic stress disorder, panic disorder, specific phobia, social anxiety, and generalized anxiety disorder. Listing of state-by-state local support groups, brochures, information about anxiety disorders, local listing of healthcare professionals providing treatment for anxiety disorders, and a national listing of clinical trials provided free.
Agoraphobics In Motion http://www.aim-hq.org Self-help group that uses specific behavioral and cognitive techniques, along with an adapted 12 Steps of AA to help people recover from anxiety disorders. Relaxation techniques and small group discussions and field trips. Group development guidelines ($2.50). Informative facilliatator's manual ($15). Subscription available for weekly handouts ($30/yr).
Sibling Support Project http://www.siblingsupport.org Organization dedicated to the life long concerns of brothers and sisters of children with special health, developmental and mental health concerns. Provides training and technical assistance regarding development of Sibshops and workshops for school-age siblings.
International Paruresis Association, Inc. http://www.paruresis.org Provides emotional support and information for persons with paruresis (shy or bashful bladder). Supports research to develop effective treatments. Information, referrals, literature, phone support, workshops, conferences and advocacy. Assistance in starting similar groups.
Schizophrenia Society of Canada http://www.schizophrenia.ca Information, support and advocacy for families and friends of persons with schizophrenia. Public awareness campaigns, advocacy and fund-raising. Newsletter, guidelines and assistance for starting self-help groups. Information and referrals, phone help, conferences, brochures, handbooks, videos.
National Alliance on Mental Illness (NAMI) http://www.nami.org (Bilingual) Dedicated to improving the lives of persons living with serious mental illness and their families. Has local self-help and educational groups for family members and mental health consumers. Online community message boards, e-newletters, blogs and online fact sheets. Quarterly magazines. Focuses on support, education, advocacy and research.
Attachment and Trauma Network http://www.radzebra.org Support and information for parents and professionals dealing with children with attachment issues and Reactive Attachment Disorder. Newsletter, phone and online support and referrals. Dues $25 (includes newsletter).
Federation of Families for Children's Mental Health http://www.ffcmh.org Parent-run organization focused on the needs of children and youth with emotional, behavioral or mental disorders and their families. Provides information, advocacy, newsletter and conferences. For local support group information, click on "Who We Are" on top menu bar; then click on "Local Chapters and State Organizations."
Dep-Anon http://www.depressedanon.com 12-step fellowship for men, women and children whose lives have been affected by a family member's depression. Members share hope, strength and experience in order to grow emotionally and spiritually.
National Down Syndrome Congress http://www.NDSCcenter.org Support, information and advocacy for families affected by Down syndrome. Promotes research and public awareness. Serves as clearinghouse and network for parent groups. Newsletter ($25/yr). Annual convention, phone support, chapter development guidelines.
The Arc http://www.thearc.org Provides support for people with mental retardation and their families. Advocacy groups and direct services. Quarterly newspaper. Chapter development guidelines.
People First Self-help advocacy organization created by and for people with developmental disabilities. Provides help in starting new chapters. Quarterly newsletter.
NORM (National Organization of Restoring Men) http://www.norm.org (Meetings for MEN ONLY; information for all) Provides a safe environment in which men can, without fear of being ridiculed, share their concerns about circumcision/restoration and for their desire to be intact and whole again. Confidential discussions of goals and methods of foreskin restoration. Information and referrals, phone support, assistance in starting new groups.
Menstuff http://www.menstuff.org (Click on 'Grouips' within menu list on left side. Then click on 'Men's Groups - Peer Led') Provides information on a variety of local men's groups in USA, Canada and a few other countries. Provides references for guides to starting a group, other resources and links.
Adult Congenital Heart Association http://www.achaheart.org Seeks to improve the qualtiy of life and extend the lives of adults with congenital heart defects. Education, outreach, advocacy and promotion of research. Online support, quarterly newsletter, regional and national confrences.
BRAIN TRUST, The Healing Exchange http://www.braintrust.org Mission is to exchange of support and information among people affected by brain tumors and related conditions inxluding patient-survivors, families, caregivers and health professionals. Online support groups cover a large range of brain tumors, acquired injuries and other special interests.
DASN - Dementia Advocacy and Support Network Int'l http://www.dasninternational.org Support for persons with early stage dementia and their supporters. Opportunity to communicate, lessen isoloation and improve the lives of all people living with early stage dementia of any kind. Supportive caregivers are also welcome. Has e-mail support group, and a chat room with several meeting times each day, available by clicking on "How To Join DASNI and Our Chat Room" on left side.
U.S. Society for Augmentative and Alternative Communication http://ussaac.org Addresses the needs of persons who are severely speech impaired or unable to speak. Works to improve services and products. Dues $63 (includes newsletter). Networking, information, referrals, conferences, advocacy and literature.
Cutis Laxa Internationale http://www.orpha.net/nestasso/cutislax Support group for those afflicted with any type of cutis laxa. A rare genetic disorder. Provides networking between those afflicted, promotes advocacy and research. Dues $55/yr.
Battered Husbands Support http://health.groups.yahoo.com/group/batteredhusbandssupport Support for men who have been, or who are currently being battered by his female or male partner. Offers message board, chatroom and useful links.
Gift From Within (Women Only) http://www.giftfromwithin.org Offers a one-on-one post traumatic stress disorder Email/Pen Pal Support Network where female victims of specific trauma can be matched with survivors of similar PSTD. A-V resources available.
ACCESS (Aircraft Casualty Emotional Support Services) http://www.accesshelp.org Matches persons who have lost a loved one in an aircraft related tragedy to volunteers who previously experienced a similar loss. Aim to to help fill a void that occurs when the emergency and disaster relief organizations disband, the initial shock subsides and the natural grieving process intensifies. Persons communicate through e-mail or by phone. Online newsletter.
National Fallen Firefighters Foundation Survivors Support Network http://www.firehero.org Provides emotional support to spouses, families and friends of firefighters who have died in the line of duty. Members are matched with survivors of similar experiences to help them cope during the difficult months following the death.
AGAST (Alliance of Grandparents, A Support in Tragedy ) http://www.agast.org Dedicated to supporting grandparents when a grandchild dies. Offers personal support, literature packet (information to help own child, siblings, etc.), provides online message boad and newsletter. Telephone support and subject matter support available (one twin died, grandchild murdered, etc.). Helps with the development of new groups.
National Parkinson Foundation http://www.parkinson.org Provides support, information, and education for persons with Parkinson's, their families and healthcare professionals. Funds research. Seeks to improve quality of life for both patients and their caregivers. Includes Young Onset Parkinson Foundation.
Vitiligo Support International, Inc. http://www.vitiligosupport.org Provides social support, information and resources to person affected by vitiligo. Active message boards, chats and international physician referral. Includes "just for kids" page. Supports research by providing participants from its membership.
Encephalitis Global http://www.encephalitisglobal.org Provides support and information for encephalitis survivors, caregivers, loved ones and for interested persons. Includes a guide for newly diagnosed persons, links, downloadable information pamphlet, group discussions and live chats.
Attachment Disorder Support Group http://adsg.syix.com Provides an interactive supportive website for parents, families, friends and professionals concerned with a child's troublesome behavior. Offers message forum, email listserv, general information, educational material and helpful links.
CARES Foundation Inc. http://www.caresfoundation.org Goal is to educate the public and professionals about all types of congenital adrenal hyperplasia, the symptoms, diagnostic protocol, treatment, genetic frequency and the necessity for early intervention through newborn screening. Offers information and support to affected individuals and their families.
National Family Partnership http://www.nfp.org Support, education, information and networking for parents to address drug prevention. Legislative advocacy on federal level and information resource for state and local efforts. Annual Red Ribbon campaign, resource center, drug prevention, anti-tobacco resource.
Alzheimer's Association http://www.alz.org Offers information, literature and assistance for caregivers of Alzheimer's patients. Provides supportive online message boards. Quarterly newsletter.
Prison Talk http://www.prisontalk.com/forums/ Online support for families of inmates. Also offers support to the incarcerated. Offers mutual support, advocacy and education.
Neurocardiogenic Syncope Fainting List http://health.groups.yahoo.com/group/NCS_F/ Support and understanding for those suffering from neurocardiogenic syncope, dysautonomia, orthostatic hypotension, neurally mediated hypotension, low blood pressure and other diseases that can cause fainting, heat sensitivity, nausea or dizziness. Open to families and friends. Sharing of stories, struggles, triumphs and information.
Vanished Children's Alliance http://www.vca.org Provides emotional support and technical assistance to families of missing children. Offers case management, search assistance, information and referral, family reunification program.
Autoerotic Asphyxiation Support http://groups.yahoo.com/group/autoeroticasphyxiationsupport Supportive message board for family and friends of those who have died by autoerotic asphyxiation.
Adult Survivors of Child Abuse http://www.ascasupport.org Mutual support for adult survivors of physical, sexual, and/or emotional child abuse or neglect. Encourages victims to become survivors, then thrivers. Online support group meetings, monthly newsletter, group starter manuals, and general information. Assistance in starting groups.
Family Caregiver Alliance http://www.caregiver.org Unmoderated listservs for caregivers to share strategies, information, education, support and ideas with each other. Provides free fact sheets and newsletter.
Veterinarians in Recovery Support network for veterinarians in recovery from alcoholism and addiction. Provides information and referrals, phone support, newsletter. Online listserv. Maintains database of members for support. Al-Anon members and recovering veterinarian staff welcome at meetings. Many VIR members are also members of International Doctors in AA, and meet during their annual conference.
I-CAN (International Child Amputee Network) http://www.child-amputee.net Mailing list for parents of children with either acquired or congential limb loss. Opportunity to share experiences with other parents and mentors who grew up as amputees.
Pet Loss Grief Support http://www.petloss.com (Multilingual)Moderated board that offers support and understanding for persons grieving the loss of their pet or who have a pet who is ill. Provides personal support and thoughtful advice. Also offers "Monday Pet Loss Candle Ceremony," chatroom, tribute pages and other resouces.
National Keratoconus Foundation http://www.nkcf.org Provides information and support to persons with keratoconus, an eye condition where the cornea progressively thins causing a cone-like bulge. Newsletter, phone support, information and referrals. Online support group. Encourages research into cause and treatment.
PSC-Support http://health.groups.yahoo.com/group/psc-support Support for patients or family members of patients with primary sclerosing cholangitis, a chronic cholestatic liver disease characterised by periductal inflammation of both intrahepatic and extrahepatic bile ducts.
Leber's Congenital Amaurosis eGroup http://groups.yahoo.com/group/LCA Provides a listserv for persons who are interested in sharing support and information relating to the genetic disorder Leber's Congenital Amaurosis.
Johns Hopkins Disease Information http://www.pathology2.jhu.edu/department/patientcare.cfm (select condition from drop down menu) Provides information and support to cancer patients and their families. Specific cancer websites include: colon, pancreas, ovarian, gall bladder and bile duct. Also has message board for Barrett's esophagus and non-cancerous conditions.
Family Village http://www.familyvillage.wisc.edu A global community that integrates information, resources and communication opportunities for persons with cognitive and other disabilities, their families, and professionals. Broad range of discussion boards.
Stalking Victims Sanctuary http://www.stalkingvictims.com Mutual-aid support and information for people who have fallen victim to individuals who have obsessively focused on them. Online support group provides the opportunity to share and gain invaluable information from others. Offers resources for identifying stalking, suggestions for dealing with it and regaining control.
Crystal Meth Anonymous http://www.crystalmeth.org 12-step fellowship for those in recovery from crystal meth addiction. Family and friends welcome. Information on starting a group available. Meetings list available on website.
Pyridoxine Dependent Kids http://groups.yahoo.com/group/b6children Support group for parents of children with pyridoxine dependency or parents who are using B6 as an anticonvulsant. Offers public and subscribers only message boards.
International WAGR Syndrome Association http://www.WAGR.org Provides information and support to persons with WAGR Syndrome or aniridia, their families, physicians and teachers. Literature, free bi-annual newsletter, networking, information, referrals and phone support. Encourages research. E-mail group.
Cerebrocostomandibular Syndrome Support Group Provides support and guidance to families of children with cerebrocostomandibular syndrome (recessed lower mandible and rib abnormalities). Exchange of messages through email. Guidelines and help available for starting new groups.
Celiac Disease Foundation http://www.celiac.org Creates awareness and provides services and support for patients, their families and professionals seeking information about celiac disease/dermatitis herpetiformis. Free information packets. Annual membership $35.00. Handbook "Guidelines For A Gluten-Free Lifestyle" is sold separately for $10. Members receive a quarterly newsletter and update notices of upcoming events. Brochure and quick start diet guide available in English and Spanish.
Angioma Alliance http://www.angiomaalliance.org Support and information for any person affected by cavernous angioma (cavernous malformation) of the brain and spine. Educational materials ,support via a community forum, listserv, chats and contact information for research studies. Maintains tissue/DNA bank and patient registry. Site available in Spanish, and (in a limited way)Portuguese. Hosts annual national family conferences and scientific workshops for researchers. Works to increase physician and public awareness of the illness.
paranoidpersonalitydisorderforum http://health.groups.yahoo.com/group/paranoidpersonalitydisorderforum/ Mutual-aid support, understanding and information for anyone affected by a loved one or friend with paranoid personality disorder. Meeting place to come together to share daily struggles and teach one another from individual experiences.
Clubfoot Support Group http://health.groups.yahoo.com/group/clubfoot/ Support group for parents of children with clubfoot/feet, persons with clubfoot/feet or anyone needing support on this topic. Goal is to provide support, friendship, and encouragement. Operates through an e-mail mailing list. Must subscribe to this list to join group.
National Dysautonomia Research Foundation http://www.ndrf.org Provides emotional support, educational materials and medical referrals for persons who have dysautonomia (a disorder of the autonomic nervous system). Offers networking, literature, advocacy, phone support, and conferences. Encourages research. Online e-mail and discussion support forum, groups and free downloadable online Patient Handbook.
Ellis Van Creveld Support Group Provides support and information for families affected by Ellis Van Creveld syndrome (aka chondroectodermal dysplasia), an extremely rare form of dwarfism. Networks families together for support. Literature, advocacy, information and referrals and phone support. Connects with medical community to find ways to save the lives of infants born with this genetic disorder.
National Students of Ailing Mothers & Fathers Support Network http://www.studentsofamf.org This network is for university students who are seeking help in coping with the serious illness or the death of a parent or loved one. Includes campus-based mutual support groups, an online newsletter, online chats, and service projects. Website provides information, how-to's on starting a group, and listing of almost 40 universities where there is initial interest in group development.
The Erythromelalgia Association (TEA) http://www.erythromelalgia.org or http://www.burningfeet.org Provides support and information to those diagnosed with erythromelalgia. Offers education to increase awareness of this rare condition within the medical profession and the general public. Fundraises to promote research into causes, diagnostic methods and treatments.
Aniridia Foundation International http://www.aniridia.net Offers support, data studies, medical advisory board, research, and education for the public, medical community and members. Provides information, referrals, literature, newsletter, phone support, pen pals, and conferences. Online e-mail support and chat rooms. Also supports those with low vision or blindness who experience the same associated conditions such as glaucoma, corneal disease and cataracts. OPTIC program helps those with Stevens-Johnson syndrome, chemical and thermal burns to the eyes and other corneal dystrophy patients.
Voice of the Retarded http://www.vor.net Works to empower families of persons with mental retardation through information and advocacy. Weekly e-mail updates and quarterly newsletter for members. Website, networking, information and referrals, advocacy, phone support and conferences. Dues $25.
Speaking For Ourselves http://www.speaking.org Self-help advocacy for people with developmental disabilities. Monthly chapter meetings. Members help each other resolve problems, gain self-confidence, learn leadership skills. Chapter development guidelines. Newsletter.
Cystinosis Research Network http://www.cystinosis.org Dedicated to providing family support, education programs, supporting and advocating for continued research. Professionals and caregivers are welcome to join. Promotes and supports research that will lead to a better understanding, improved treatments and a cure for cystinosis. Dedicated to improving awareness and education of cystinosis and to be utilized as a reesource for families and public. Programs include support group, networking, toll-free number, website, newsletter and family conferences. Website to improve awareness and education of cystinosis for patients, families and physicians. Non-moderated but members must be pre-approved by CRN.
Latetalkers http://groups.yahoo.com/group/latetalkers E-mail group to discuss developmental speech delays caused by apraxia, dyspraxia, phonological disorders, autism spectrum disorders, learning disabilities or other causes. Aim is to help children attain intelligible speech. Open to families, speech and language pathologists, medical professionals, students and educators.
iVillage Health Message Boards http://www.ivillage.com/boards Provides various message boards concerning all aspects of health including menopause, breast cancer, addictions, allergies, arthritis, heart, immune disorders, vision, disabilities, diabetes, caregivers, brain disorders, infertility, respiratory, mental health, pain, parenting, thyroid, medication. Mailing lists, message boards, chats and newsletter.
National Hydrocephalus Foundation (NHF) http://nhfonline.org Mission is to establish and facilitate a communication network, provide informational and educational assistance to individuals and families affected by hydrocephalus and increase public awareness. Promote and support research on the cause, prevention and treatment of hydrocephalus. Guidelines to help start support groups available. Help sheets, brochures, physician referrals and quarterly newsletter.
BPSO (Bipolar Significant Others Bulletin Board) http://www.bpso.org Provides support and information for families and friends of persons with bipolar disorder (aka manic depression). Opportunity to communicate online with others in similar situations. Website offers chat, forums and e-mail list.
SNAP (Survivors Network of Those Abused by Priests) http://www.snapnetwork.org Support for men and women who were sexually abused by any clergy person (priest, brother, nun, deacon, teacher, etc.) Extensive phone network, newsletter, advocacy, conferences, information and referrals. Information on finding support groups. Dues $25 (optional).
Coalition for Pulmonary Fibrosis http://www.coalitionforpf.org Information, resources, educational materials and support for patients with pulmonary fibrosis.
Worster-Drought Syndrome Support Group www.wdssg.org.uk Provides support and information for families of children with Worster-Drought syndrome, a form of cerebral palsy. Offers phone support in the United Kingdom. Pen pals, networking of families, literature and newsletter.
TEF/VATER Support Network Offers support and encouragement to parents of children with tracheo-esophageal fistula, esophageal atresia, and VATER. Aims to bring current information to parents and the medical community. Newsletter, information and referrals, phone support.
FD Now Parent-run foundation that supports cutting-edge familial dysautonomia research. Provides information and newsletter.
Congenital Heart Information Network http://www.tchin.org Offers information, support and resources to families of children with congenital heart defects or acquired heart disease and to adults with congenital heart defects. Also open to interested professionals.
Abused Guys http://groups.yahoo.com/group/abusedguys Provides support for male victims of domestic violence. Offers online chat rooms and message forum. Must join the group to post.
Basal Cell Carcinoma Nevus Syndrome Life Support Network http://www.bccns.org Provides support services to patients, families and medical professionals dealing with the many manifestions of basal cell carcinoma nevus syndrome (aka Gorlin syndrome or nevoid basal cell syndrome). Offers online forum, quarterly newsletter, annual retreat and conference, and periodic regional meetings.
NKH International Family Network http://www.nkh-network.org Support and networking for parents of children with nonketotic hyperglycinemia (NKH), an inherited metabolic disorder. Newsletter, online network, discussion board, phone support, information and referrals.
Drowning Support Network http://health.groups.yahoo.com/group/drowningsupportnetwork/ Offers support for people who have lost loved ones in drownings or other water accidents, especially those in which no remains were found, or in which the recovery process has been lengthy or dificult.
Infantile Spasms List http://health.groups.yahoo.com/group/infantilespasms Support and information parents and caregivers of children with infantile spasms. Opportunity to discuss their children, treatment options and to offer support. Professionals welcome.
Kallmann Syndrome Organization http://www.kallmanns.org Provides support, information and encouragement to patients with Kallmann syndrome and other forms of hypogonadotrophic hypogonadism. Promotes awareness of the causes, symptoms and treatments for these disorders. Open to families and friends.
Kallmann's Syndrome http://health.yahoo.com/ency/healthwise/shc29kal Onlne support group for people with Kallmann's syndrome, their families and medical professionals. Diverse resources, photo gallery, weekly surveys and various discussions.
Crouzon Support Network http://health.groups.yahoo.com/group/crouzons/ Support group for individuals and families who are dealing with Crouzon syndrome and other craniofacial anomaies. A place to share experiences, mutual support, inspiration and information.
Abused Survivors http://health.groups.yahoo.com/group/abusedsurvivors Online support group that offers an outstretched hand to adult survivors of abuse (physical, verbal, emotional or sexual). Open only to survivors.
Panic Survivor http://www.panicsurvivor.com/ Support group for persons who suffer from anxiety, panic attacks, generalized anxiety, social anxiety, agoraphobia, post traumatic stress disorder, obsessive compulsive disorder, hypochondria or any other form of anxiety. Focus is on recover, day-to-day survival, with a "can do" attitude.
NOVA (National Organization of Vascular Anomalies) http://www.novanews.org Provides support for patients and their families in the diagnosis of hemangiomas and vascular malformations. Networks families together for support. Offers videos, doctor referrals, free medical conferences, educational and support materials. Online newsletter. Holds international conferences, contact K. Hall at khall@mail.novanews.org for more conference information.
BPDWORLD (Borderline Personality Disorder) http://www.bpdworld.org Mutual support for individuals with borderline personality disorder (BPD) provided through message boards. Started by a person with BPD in England, who has developed the online organization as a non-profit. Click on "Community Forums" on top menu bar to see message boards.
National Cervical Cancer Coalition http://www.nccc-online-org Provides on-going support system for women, family members and friends facing issues related to cervical cancer, HPV and other HPV cancers. Offers phone pal system matching women together for support, online moderated message board, newsletter, annual conferences, information and referrals. How-to materials on starting a local NCCC chapter available.
Degos Patients Support Network http://www.degosdisease.com Support and information for persons with Degos disease (aka Malignant Atrophic Papulosis or Kohmeier-Degos Disease), an extremely rare thrombotic vasculopathy disease affecting people of all ages all over the world. Message board for patients, their families and caregivers. Secure section with access to discussion forum and other information for medical professionals only.
Club HPV http://health.groups.yahoo.com/group/clubhpv Opportunity for people with human papilloma virus (genital warts) to share experiences and information with others.
United Spinal Association Aim is to provide support and improve the quality of life for all Americans with spinal cord injuries and disorders.
Pheochromocytoma Information Group http://www.pheochromocytoma.org Offers support through information for persons affected by pheochromocytoma or multiple endocrine neoplasia syndrome.
Musella Foundation http://www.virtualtrials.com Provides emotional support and exchange of information for patients with various brain tumors and their families. Information on research, medication and clinical trials. Chatrooms, support groups, video library and other resources.
SVT (Supreventricular Tachycardia) Support http://health.groups.yahoo.com/group/SVTSupport/ E-mail list support. Mutual aid support from and for persons with supra ventricular tachycardia or any type arrhythmia. Newsletter.
Hepatitis Neighborhood http://www.hepatitisneighborhood.com An online educational resource to help individuals understand hepatitis, treatment options, find support, message boards and chatrooms.
Woman's Emotional Abuse Support http://health.groups.yahoo.com/group/womansemotionalabusesupport/ Offers mutual support and understanding for victims of verbal abuse. Provides message boards, chat room, links and e-mail group support.
Canadian Strep B Foundation http://www.strepb.ca Educates the public about group B streptococcal infections during pregnancy. Information and referrals, advocacy, and phone support. Group development guidelines available.
Holistic Moms Network http://www.holisticmoms.org Provides awareness, education and support for holistic parenting and provides a nurturing, open-minded and respectful community for parents to share these ideals. Encourages moms and dads to parent naturally and educate themselves about alternative health, mindful parenting and natural healing. Assists in starting new chapters.
National Fibromyalgia Association (NFA) http://www.FMaware.org Develops and executes programs dedicated to improving the quality of life for people with fibromyalgia by increasing the awareness of the public, media, government and medical communities. Patient assistance, information programs, awareness outreach, support group dirctectory and quarterly magazine.
Atresia-Microtia Group http://health.groups.yahoo.com/group/AtresiaMicrotia Listserv for people, and parents of children, with aural atresia and/or microtia. Issues addressed include emotional support, hearing aids, ear reconstruction, and insurance.
Little Hearts, Inc. http://www.littlehearts.org Provides support, resources, networking and hope to families affected by congenital heart defects. Provides newsletter, literature, phone support, annual picnic and advocacy.
Methadone Anonymous http://www.methadone-anonymous.org Self-help group for, and led by, current and former methadone maintenance treatment patients. Open to anyone interested in recovery from chemical dependency. Literature, conferences, support group meetings, online chat rooms (methadone users, detox, chronic pain, buprenorphine/suboxone treatment, caregivers, methadone pregnancy info, etc). Online meetings daily. Assistance in starting local groups (information on how to start local groups available online). Also, video on website.
Positive Partners of Survivors http://health.groups.yahoo.com/group/positivepartnersofsurvivors Support for anyone who has a loved one who was sexually abused. Offers mutual support and understanding. Provides chatroom, e-group and message board.
Heroin Anonymous http://www.heroin-anonymous.org 12-Step program adapted from AA's 12-steps and is concerned solely with the personal recovery and continued sobriety of heroin addicts. There are no dues or fees for membership. Has groups in four states: Arizona, Texas, Michigan, California. Will assist those who wish to start groups in new locations - interested persons can obtain group literature from the headquarters, or by PDF at their web site.
Recoveries Anonymous http://www.r-a.org Spiritual recovery group for anyone seeking a solution to for any kind of addiction, problem or behavior.Families and friends welcome. "How To Begin..." Guides and Start A Group Kit can be downloaded for free from website.
Mullerian Anomalies of the Uterus http://health.groups.yahoo.com/group/MullerianAnomalies/ Support and information for those with mullerian anomalies of the uterus such as bicornuate, septate, unicornauate, hypoplastic and didelphys uteria. Weekly chat, e-mail list and message board.
Mycosis Fungoides International http://health.groups.yahoo.com/group/mycosisfungoidesint Support group aimed at patients and relatives/friends of patients who have mycosis fungoides. Message board.
National People of Color Consumer/Survivor Network NPCCSN is a mutual support network to help educate members, provide resources & information and technical assistance on self-help groups, peer-directed services, cultural competency, trauma services and other related information on mental health.
Dental Fear Central http://www.dentalfearcentral.org/ Support for anyone with an extreme phobia of dentists or specific dental fears. Information for dental professionals and dental students with an interest in dental anxiety management. Various message boards, including one for mutual support and another to "Share Your Success Story." "Ask the Dentist" section and information on coping with different fears associated with dentistry.
All Diabetic International (ADI) http://health.groups.yahoo.com/group/alldiabeticinternational Support and information for those with type 1, type 1.5, type 2 diabetes and prediabetes. Topics include medication interactions, diet, pumps and related diabetic conditions. Bimonthly online chats and newsletter available.
Diabetes International http://health.groups.yahoo.com/group/diabetes_int Moderated mailing list for people interested in or suffering from diabetes. Offers support and education for problems related to diabetes and different ways to get and keep diabetes under control.
International Premature Ovarian Failure Foundation http://www.pofsupport.org Mutual support women who have prematurely entered menopause. Information and referrals, phone support, literature. Assistance in starting groups.
Obsessive-Compulsive Anonymous http://www.compulsiveanonymous.org 12-Step. Self-help group for people with obsessive-compulsive disorders. Online meetings. Assistance and guidelines available for starting groups.
Encephgroup http://health.groups.yahoo.com/group/encephgroup/ Support group for survivors of all types of encephalitis and their family members, caregivers and friends.
Quad-List http://www.makoa.org/quadlist.htm Forum for quadriplegics (tetraplegics) to support and communicate with others who share the same condition. Not strickly a SCI (spinal cord injury) forum. Forum for anyone who suffers a partial or full loss of function of all 4 extremities of the body, i.e. a quad due to any reason not just from a SCI.
WE MOVE http://www.wemove.org Support and exchange of information and ideas among various movement disorder communities for patients, families and caregivers. Includes forums for such disorders as Parkinson's disease, essential tremor, mycoclonus, dystonia, corticobasal degeneration and Rhett syndrome.
One Day at a Time http://www.odaat.us To help people with HIV infection become aware of and make use of services provided. To encourage self-empowerment by providing a source of support given by other HIV+ people. Also provides drug and alcohol addiction and homeless shelter services, community outreach, prevention and education. Newsletter and group development assistance.
Parent Soup Message Boards http://www.parentsoup.com/boards Offers a large variety of message boards which deal with parenting issues including: infertility, pregnancy, parenting challenges, parents of disabled, pregnancy loss, newborn babies, toddlers, adoption, family issues, etc.
Holoprosencephaly Support Group http:www.health.groups.yahoo.com/group/holoprosencephaly Mutual support for parents and families of children with holoprosencephaly (HPE). HPE is a rare birth disorder caused by the failure of the forebrain of the embryo to properly divide, causing defects in the development of the face and brain structure and function.
International Ministers and Pastors in Recovery Mutual support network for pastors and ministers who are recovering from addictions and actively participating in a 12-step recovery program. Provides phone network, information and referrals, and meets within other int'l 12-step conference. Assistance in starting local/regional groups.
Dysautonomia Youth Network of America, Inc. (DYNA) http://www.dynakids.org Provides young patients (under 21) with a support and outreach network focused on positive peer support. Strives to heighten awareness of dysautonomia conditions (postural orthostatic tachycardia syndrome, neurally mediated hypotension, neurocardiogenic syncope, vasovagal syncope, generalized dysautonomis, birth dysautonomia, non-familial dysautonomia, post-viral dysautonomia)within the pediatric and adolescent medical communities. Newsletter, literature (English, Spanish, Italian), pen pal program, moderated message board and national conference. Membership is free.
TerrificKidsWFA http://health.groups.yahoo.com/group/TerrificKidsWFA Support for parents, family and friends of children that have food allergies or food sensitivities. Share stories, recipes, advice and alerts of certain foods that might have hidden ingredients in them.
National Eosinophilia-Myalgia Syndrome Network http://www.nemsn.org/ Peer support and educational information for EMS survivors and their families. Supports research into L-trytophan induced EMS and other similar auto-immune disorders. Newletter, phone help and online e-mail discussion group.
PML Survivors and Supporters http://health.groups.yahoo.com/PMLSurvivors Support forum to educate, inform and inspire persons with progressive multifocal leukoencephalopathy and their families. Opportunity to share treatment information and support to any person affected with or by PML.
NeuroTalk http://neurotalk.psychcentral.com/ Provides message boards for dozens of different neurological disorders to include a variety of neuromuscular, movement, and spinal disorders, as well as chronic pain, Repetitive Strain Injury RSI hydrocephalus, Thoracic Outlet Syndrome, Peripheral Neuropathy, and rare neurological disorders. Some chat meetings.
HAMS: Harm Reduction for Alcohol and Other Substances http://health.groups.yahoo.com/group/hamshrn Support and information for people who choose to practice safe intoxication, as well as those choosing moderate drinking or quitting as a goal. Members offer simple and pragmatic strategies for reducing the risks of recreational intoxication to self and others.
CoDependent Online Support Group http://health.groups.yahoo.com/group/CoDependent Support for those who are addicted to dysfunctional relationships. Topics include: lack of love, overpleasing, control, fear of abandonment and self-esteem.
Stroke Talk for Young People http://health.groups.yahoo.com/group/stroketalkforyoungpeople Support, information and tips for the younger stroke survivor (stroke or TBI happened before age 55). Families and caregivers welcome.
IMPORTANT NOTE FOR MODEL GROUPS: Model groups are not national or international groups. Contact this group only if you are interested in starting a similar group in your area or country. When writing to this group from the U.S.A., always include a stamped, self-addressed envelope. A small contribution toward their copying costs is also helpful. If you telephone, always be considerate of the time of day or night; most of these numbers are home phones.