Dysautonomia

Self Help Clearinghouse

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: 12/3/2009

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:
National Dysautonomia Research Foundation
P.O. Box 301
Red Wing, MN 55069-2108
Voice: 651-267-0525 (Mon.-Fri., 8am-6pm CST)
Fax: 651-267-0524
Website: http://www.ndrf.org
E-mail: ndrf@ndrf.org
Verified: 12/3/2009

FD Now

National. Provides support to parents, families and others interested in dysautonomia. Networking and funding for familial dysautonomia research. Information and newsletter.
Write:
FD Now
c/o Ann Slaw
1170 Green Knolls Dr.
Buffalo Grove, IL 60089
Voice: 847-913-0455
Verified: 12/10/2009

National Society For MVP and Dysautonomia

National. 59 affiliated groups. Founded 1987. Assists individuals suffering from mitral valve prolapse (MVP) and dysautonomia to find support and understanding. Education on symptoms and treatment. Newsletter and literature.
Write:
National Society MVP and Dysautonomia
880 Montclair Rd., Suite 370
Birmingham, AL 35213
Voice: 1-800-541-8602 or 205-592-5765
Fax: 205-592-5707
Website: http//www.mvprolapse.com
E-mail: staff@mvprolapse.com
Verified: 12/2/2009

Dysautonomia Youth Network of America, Inc. (DYNA)

(MULTILINGUAL) 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 dysautonomia, 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.
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: 12/3/2009