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 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 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: 1/26/2011
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
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: 10/20/2011
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
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 1407 W. 4th St., Suite 160 Red Wing, MN 55069 Voice: 651-267-0525 (Mon.-Fri., 8am-6pm CST) Fax: 651-267-0524 Website: http://www.ndrf.org E-mail: ndrf@ndrf.org Verified: 1/26/2011
The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.
For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp
If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org
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