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Dysautonomia

Self Help Clearinghouse

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

Dysautonomia Youth Network of America, Inc. (DYNA)

(MULTILINGUAL) International network. Founded 1999. Provides young patients (under 26) 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.dynainc.org
E-Mail: info@dynainc.org
Verified: 3/12/2014

National Dysautonomia Research Foundation

National. Provides support via Discussion Forum and Medical Network.
Write:
NDRF
PO Box 301
Red Wing, MN 55066-0301
Voice: 651-267-0525
Fax: 651-267-0524
Website: http://www.ndrf.org
E-Mail: ndrf@ndrf.org
Verified: 3/12/2014

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:
National 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: 3/12/2014

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
Website: http://www.fdnow.org
Verified: 3/5/2014

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