Major Initiatives

Prevention, treatment and improved quality of life – these are the things work toward, every day.

By funding the best minds and facilities around the world, we are all working together to find more answers and a better, longer life for those born with FD.

Funding Clinical Care

The Dysautonomia Foundation supports clinical treatment and research for people with FD by:

• Maintaining the Dysautonomia Center and Dysautonomia Research Lab at New York University Medical Center;
• Maintaining the Israeli FD Center at Tel Hashomer Sheba Hospital in Tel Aviv;
• Sponsoring and operating social services project;
• In funding research or patient care, the Dysautonomia Foundation does not pay for indirect costs.

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. In funding research or patient care, the Dysautonomia Foundation does not pay for indirect costs.

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.