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Dysautonomia Foundation, Inc.

Last Update:11/21/2017
Contact:Lanie Etkind
Title:Executive Director
Address:315 West 39th Street
Suite 701
New York, NY 10018
County:Out of state
Phone:(212) 279-1066
Toll Free:
Fax:(212) 279-2066
The Dysautonomia Foundation is a nonprofit organization supporting the best possible medical care and scientific research for the benefit of people afflicted with Familial dysautonomia (FD). The Foundation also conducts social service and public awareness programs for the benefit of the FD community and for those in the general population who may be at risk for FD.
Program Description

Familial Dysautonomia is a genetic disease present at birth in male and female Jewish babies, primarily causing dysfunction of the autonomic and sensory nervous systems. Dysfunction is a result of an incomplete development of the neurons of these systems.

Major Initiatives:

Funding Clinical Care: The Dysautonomia Foundation supports clinical medical care for people with FD by:

  • Maintaining the Dysautonomia Center and Dysautonomia Research Lab at New York University Medical Center;
  • Maintaining the Israeli FD Center;
  • Sponsoring social services projects

Funding Scientific Research: The Dysautonomia Foundation supports research studies into FD and the FD gene. Basic scientific research and clinical medical research regarding FD is currently being supported at a number of prestigious hospitals and universities.

Supplying Informative Material: The Dysautonomia Foundation provides a continual flow of information to families, the medical community and other lay and professional persons who request medical, educational or promotional material concerning FD.

Advocating for the FD Population: The Dysautonomia Foundation works with the medical community and works with the government to further the concerns of people with FD. We work with the medical community to educate doctors about FD, to let them know that they can call on our experts for assistance in treating FD patients, and to encourage medical governing bodies to recognize the need to require doctors to inform patients about the existence and risk of FD (in 2004, due in part to our efforts, the American College of OB-GYNs, ACOG, published an opinion telling doctors to inform Ashkenazi Jewish patients about the risk of FD and the need to get tested for FD).

We also advocate on the government level to try to get states to recognize FD as a developmental disability so that FD patients can more easily obtain benefits / assistance for FD treatment, and to require insurance companies to provide coverage for the cost of genetic testing.

Health Services
Rare Disorders
Counties Serviced
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail:

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