Dysautonomia

Self Help Clearinghouse

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.
Write:
Nat'l Society MVP and Dysautonomia
880 Montclair Rd., Suite 370
Birmingham, AL 35213
Voice: 205-592-5765 or 1-800-541-8602
Fax: 205-592-5707
Website: http://www.mvprolapse.com
E-mail: staff@mvprolapse.com
Verified: 8/15/2012

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.
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: 8/15/2012

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: 7/16/2012