A National Cancer Institute Comprehensive Cancer Center

 

Patients & Families

Health Care Professionals

Researchers

Donors & Volunteers

Employees

 

Health Encyclopedia

 

 

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.

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 treatment as well as clinical and scientific research. Aim is to provide treatment, research, public education and social services for people affected by or at risk for familial dysautonomia. 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: 9/2/2011

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: 2/17/2012

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

Fax: 205-592-5707

Website: http://www.mvprolapse.com

E-mail: staff@mvprolapse.com

Verified: 10/20/2011

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: 8/22/2011

This information does not replace the advice of a doctor. Healthwise, Incorporated disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use. How this information was developed to help you make better health decisions.

Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.