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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.

FD NOW

National. Provides support to parents, families and others interested in dysautonomia. Networking and funding for familial dysautonomia research. Information and newsletter.

Write:

Ann Slaw

c/o FD NOW

1170 Green Knolls Dr.

Buffalo Grove, IL 60089

Voice: 847-913-0455

Website: http://www.fdnow.org

Verified: 1/22/2013

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: 1/9/2013

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: 2/12/2013

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