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About Us

Who We Are

The Familial Dysautonomia Foundation, Inc. was formed in 1951 by desperate parents searching for a way to help their children living with Familial Dysautonomia (FD). Today, the Foundation works for the benefit of all people afflicted with FD by supporting medical care and scientific research, as well as conducting social service and public awareness programs.

 

What We Do

We advocate for the FD Population.

The Familial Dysautonomia Foundation works with the medical community and the government to further the concerns of people with FD. We collaborate with the medical community to educate doctors about FD, and to encourage medical governing bodies to recognize the need to require doctors to inform patients about the existence and risk of FD.

 

We ensure those affected by FD receive life-saving medical care.*  

The Foundation continues to be the main source of funding for the world’s only FD treatment centers in New York and Israel. Learn more about FD Care.

We also provide access to vital medical care and equipment that alleviates the daily struggles of individuals living with this devastating disorder.

 

We fund ground-breaking research at hospitals and universities around the world.*

We fund research that improves quality of life and life expectancy for people with FD. Researchers are also making cutting-edge strides in the areas of genetic screening and testing in order to find a cure for FD.

 

We raise public awareness about Familial Dysautonomia.

The Familial Dysautonomia Foundation seeks to educate both affected families and the broader medical community about FD. We sponsor a variety of programs that include:

  • Hosting an annual symposium for FD families (FD Day),
  • Sponsoring medical conferences for doctors and scientists,
  • Publishing a comprehensive FD care handbook

 

*It is the FD Foundation’s policy to pay no indirect or overhead costs as part of grants or gifts made to support FD care or research.

 

 

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©2022 Familial Dysautonomia Foundation, Inc.
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Photos by Rick Guidotti, POSITIVE EXPOSURE EIN 13-6145280

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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.