Familial Dysautonomia: the leader in FD treatment and research
A condition most people
have never heard of.
Familial Dysautonomia Care
Making Strides in FD Treatment and Care
Thanks to advances in medical care, it is now possible for patients with FD to live better, safer, and longer lives.
With effective care, patients who once had a 50% chance of reaching age 5, now have a 50% chance of becoming 40 years old.
Today there are scores of 20, 30, and 40-year olds living with FD, and the oldest person with FD is 60. Many adults have gone to college, some have jobs and others have married.
This is not possible without the ability to receive effective treatment and care.
The Familial Dysautonomia Foundation, Inc. has established the only two dedicated treatment centers for FD research and medical care in the world.
50 years ago, the Familial Dysautonmia Foundation established The Dysautonomia Center at NYU Langone Medical Center.
The FD Center is the world’s largest FD treatment program and the
only clinical research lab for the investigation of FD therapies.
The Familial Dysautonomia Foundation continues to be the primary funding source for this unique facility dedicated to providing medical care for people with FD.
On a typical day at the Dysautonomia Center…
Every 42 minutes there is an urgent medical call
4 patients have test results that need to be reviewed
2 patients are hospitalized
The Center directly follows approximately 160 patients with FD.
12 clinical studies are currently underway.
The Dysautonomia Center offers
- Scheduled visits as well as 24/7 emergency consults with physicians for FD patients worldwide.
- Virtual visit kits that allow for real-time collection of vital health data during telemedicine appointments.
- Personalized medical care programs based on periodic evaluation visits.
- Referrals to a mental health professional, thanks to a grant from the Montreal Chapter of Dysautonomia. To learn more, please contact the Dysautonomia Center.
- Comprehensive care treating speech difficulties, gastrointestinal issues, feeding and digestion issues, opthamologic complications, and orthopedic problems.
- Opportunities to participate in clinical research studies.
- The world’s only comprehensive FD patient registry. This is an electronic relational database of medical information dating back to 1970.
Stay up to date with the latest from the Dysautononmia Center at NYU by going to: https://dysautonomiacenter.com/
Dysautonomia Center in Israel
The Dysautonomia Center in Israel, at Hadassah Hospital-Mt. Scopus in Jerusalem, was established in 1980. The Israeli Center was established as a collaborative center and is modeled on the New York facility. The Foundation is proud to be the primary source of funding for the Center.
In 2012, the Familial Dysautonomia Foundation began funding a second FD Center in Israel at Sheba Medical Center in Tel Hashomer.
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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.
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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.
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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.