Self Help Clearinghouse
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The Dysautonomia Foundation, Inc.
International. 13 chapters. Founded 1951. Provides peer support, information and referrals for families affected by familial dysautonomia. Raises funds for medical treatment as well as clinical and scientific research. Aim is to provide treatment, research, public education and social services for people affected by or at risk for familial dysautonomia. Testing for all Ashkenazi Jewish individuals is now available. Newsletter.
Dysautonomia Foundation, Inc.
315 W. 39th St., Ste. 701
New York, NY 10018
Dysautonomia Youth Network of America, Inc. (DYNA)
(MULTILINGUAL) International network. Founded 1999. 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 dysautonomia, birth dysautonomia, non-familial dysautonomia and 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.
1301 Greengate Court
Waldorf, MD 20601
National Society for MVP and Dysautonomia
National. 54 affiliated groups. Founded 1987. Assists individuals suffering from mitral valve prolapse syndrome and dysautonomia to find support and understanding. Education on symptoms and treatment. Newsletter and literature.
National Society MVP and Dysautonomia
880 Montclair Rd., Suite 370
Birmingham, AL 35213
National. Provides support to parents, families and others interested in dysautonomia. Networking and funding for familial dysautonomia research. Information and newsletter.
c/o Ann Slaw
1170 Green Knolls Dr
Buffalo Grove, IL 60089
The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.
For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp
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