Familial Dysautonomia: the leader in FD treatment and research
Building healthy lives
and happy futures.
Our Major Accomplishments
The foundation has funded many of the breakthroughs in FD research, including advances in treatment and genetic screenings.
- Established the world’s only treatment centers dedicated exclusively to FD
- Endowed the world’s only professorships for FD research and treatment (at NYU School of Medicine)
- Established the world's only FD clinical research lab
- Largest source of funding for FD research and treatment (more than government, private industry, or any other nonprofit organization)
- Funded treatment that has increased life expectancy from 5 years to 40 years.
- Funded advances in treatment leading improved quality of life for FD patients.
- Funded research that led to understanding of the disease as a neurological condition.
- Funded research that led to discovery of the FD gene.
- Funded research that led to general population carrier screening, resulting in a significant reduction in the birthrate of new FD cases.
- Advocated for government recognition of FD as a developmental disability.
- Advocated for ACOG to require doctors to inform patients of the risk of FD and the need for genetic testing.
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Photos by Rick Guidotti, POSITIVE EXPOSURE
EIN 13-6145280
Website Disclaimer
The information provided in the Dysautonomia Foundation web site is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, or your child, or someone you know, suffer from the conditions described herein, please see your health care provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
The Foundation provides linked sites only for the convenience of the visitor. The Foundation does not control nor does it warrant the accuracy of any information provided by these linked sites. Individually identifiable user information is not collected through this site unless voluntarily submitted to the Foundation by the user. Linked sites may have different privacy policies. Any User information submitted directly to the Foundation will not be shared with other parties without the express written consent of the User.
Privacy Policy
The Familial Dysautonomia Foundation will not share or sell any personal information (name, address, email address, phone numbers) that you submit through this website or offline with any third party organization without your explicit consent.
If you conduct a transaction on our website for the purpose of a charitable contribution, we will not record or store any of your credit card information on our servers or in our records. All credit card transactions are conducted through secure web pages.
If you make an online contribution to one of our events or fundraisers, we may ask your permission to list your name and/or the amount of your contribution and/or the name of the organization you represent (if applicable) as a sponsor of the event or as a contributor to the event. We will not list any of your personal information without your consent.
Medical Disclosure
The FD Foundation does not offer medical advice. We always recommend that you contact the Dysautonomia Center (link here) or your personal physician.