Self Help Clearinghouse

Dysautonomia

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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 and clinic research. Aim is to raise public awareness about the disease. Testing for all Ashkenazi Jewish individuals is now available. Newsletter.
Write:
Dysautonomia Foundation, Inc.
315 W. 39th St., Ste. 701
New York, NY 10018
Voice: 212-279-1066
Fax: 212-279-2066
Website: http://www.familialdysautonomia.org
E-mail: info@familialdysautonomia.org
Verified: 10/24/2007

Dysautonomia Youth Network of America, Inc. (DYNA)

International network. Founded 2002. 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. Newletter, literature (English, Spanish, Italian), pen pal program, moderated message board and national conference. Membership is free.
Write:
DYNA
1301 Greengate Court
Waldorf, MD 20601
Voice: 301-705-6995
Fax: 301-638-3962
Website: http://www.dynakids.org
E-mail: info@dynakids.org
Verified: 6/5/2007

FD Hope

National. Parent-run foundation that supports cutting-edge familial dysautonomia research. Provides information, newsletter and FD-Net (e-mail network for families and professionals).
Write:
FD Hope
1170 Green Knolls Dr.
Kenneth M. Shaw, Ph.D.
Buffalo Grove, IL 60089
Voice: 847-913-0455
Verified: 5/1/2007

National Dysautonomia Research Foundation

National network. Founded 1996. Provides support, educational material and medical referrals for persons who have dysautonomia (a disorder of the autonomic nervous system). Networking, literature, advocacy, phone support and conferences. Encourages research. Online e-mail and discussion support forum, groups and free downloadable online Patient Handbook.
Write:
Nat'l Dysautonomia Research Fdn.
P.O. Box 301
Red Wing, MN 55069
Voice: 651-267-0525
Fax: 651-267-0524
Website: http://www.ndrf.org
E-mail: ndrf@ndrf.org
Verified: 10/24/2007

National Society For MVP and Dysautonomia

National. 59 affiliated groups. Founded 1987. Assists individuals suffering from Mitral Valve Prolapse and dysautonomia to find support and understanding. Education on symptoms and treatment. Newsletter and literature.
Write:
Nat'l. Society MVP and Dysautonomia
880 Montclair Rd., Suite 370
Birmingham, AL 35213
Voice: 1-800-541-8602 205-592-5765
Fax: 205-592-5707
Website: http//www.mvprolapse.com
E-mail: staff@MVProlapse.com
Verified: 11/3/2007

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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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