Our Core Values

The Dysautonomia Foundation, Inc., is the leading organization for science-based education and patient services for those living with familial dysautonomia (FD) today. We are dedicated to finding improved therapies for FD through an aggressively funded research agenda to improve the quality and quantity of life of children and adults afflicted with FD.

History

Since its inception as a 501(c)(3) non-profit public charity in 1951 (Federal Tax ID 13-6145280) the Dysautonomia Foundation has grown from a small group of parents meeting around a kitchen table in New York City – into a vibrant organization with full time staff that supports advocacy, research and treatment for the FD community.

FD is a Jewish genetic disease that is always life-threatening and sometimes fatal. Those afflicted with FD can’t do a lot of things most people take for granted. They can’t feel heat or cold or pain. They lack even the most basic normal reflexes, and often experience severe cardiovascular, pulmonary, orthopedic, gastrointestinal and renal problems. Frequent hospitalizations and multiple surgeries are common. Crying without tears is one of the most striking symptoms of FD.

We are 100% patient-focused

Our clinical research centers continue to unravel the mysteries of FD, allowing for a “personalized medicine” approach to patient care and an ongoing program of clinical trials for new FD therapies. Advances in clinical research have led to important breakthroughs in understanding the physiology of FD. We strive to make progress in the following key areas through a patient-focused lens:

  • Speed treatments that can slow, stop or reverse the progression of FD
  • Speed better therapies that will alleviate the severe symptoms of FD
  • Support patients and caregivers in handling the challenges of living with FD
  • Promote education, awareness, and testing to eradicate the occurrence of new cases of FD

We’ve made great progress – but much more work remains to be done in order to achieve our goals.

With your support, we will accelerate breakthroughs patients can feel in their everyday lives.

For further information on testing, treatment & research, please contact the Dysautonomia Foundation at:

212-279-1066 or info@famdys.org
www.famdys.org