A condition most people

have never heard of.

FD 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.

 

Dysautonomia Center at NYU

 

Nearly 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…

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Every 42 minutes there is an urgent medical call

 

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4 patients have test results that need to be reviewed

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2 patients are hospitalized

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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.
  • Telemedicine for those living outside the New York area.
  • Personalized medical care programs based on periodic evaluation visits
  • 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.


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.