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Familial Dysautonomia (FD)
A disease most people have never heard of . . .
Familial Dysautonomia (FD) is a rare genetic neurological condition that
affects the sensory and autonomic nervous systems, causing severe
gastrointestinal, cardiac, pulmonary, orthopedic, renal and ophthalmologic
problems. Watch our
awareness
video.
A Foundation dedicated to helping them . . .
The Dysautonomia Foundation is a 501(c)(3) nonprofit public charity that
supports medical treatment, research, public awareness and social services
for the benefit of people afflicted with FD. The Foundation has established
the world's only two FD treatment centers and is the largest single source
of funding for research and treatment specifically for the benefit of people
with FD. Watch our
video about FD and the Dysautonomia Foundation's
work.
Remarkable progress, incredible challenges . . .
FD was once considered a fatal disease, but the Foundation's efforts have
resulted in dramatic improvements in the quality of life and life expectancy
for FD patients. Still, people with FD must overcome tremendous challenges,
including frequent hospitalizations, major surgeries and daily medical and supportive therapies as they try to live normal lives.
Join us, and make a difference in their lives.
The gene that causes FD has been identified. Genetic therapies are possible,
but they are costly and time-consuming to develop. A new clinical research
facility is now exploring new therapies. Basic, clinical and translational
researchers are working together to improve survival and create positive
outcomes for people with FD. With
your help, we can make a real difference in their lives.
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FD News |
FD in the News
A family's experience with FD, and their efforts to raise awareness and funds
for FD research through the FD Cycle Tour.
more |
FD Screening Bill Vetoed
NY Governor Paterson vetoes vital FD screening and education legislation.
more |
Oxygen on Airplanes
Airlines have changed their policies on providing in-flight oxygen.
We make it easier for FD patients to arrange for portable oxygen concentrators for air travel.
more |
FD in the News
FD is featured in an article in the journal
Science. "Chasing a Disease to the Vanishing Point" explores the
challenge of attracting the interest of donors and researchers.
more |
Research Consortium
FD is one of several diseases being studied by a research consortium of the nation's foremost autonomic experts, organized by the NIH's
Office of Rare Disorder's.
more |
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