Dysautonomia Foundation, Inc.

Rating: 5 stars   1 review

Issues: Health, Cancer

Location: 315 W 39th St., #701 New York NY 10018 USA

Mission: The Dysautonomia Foundation funds and operates medical treatment, research, social services and public awareness programs for the benefit of people afflicted with familial dysautonomia (FD).
Programs: Treatment and Research Centers at NYU Medical Center (USA) and Hadassah Hospital(Israel)

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Rating: 5 stars  

Familial Dysautonomia is a rare genetic disorder that causes severe problems to the gastrointestinal, cardiac, pulmonary, orthopedic, renal, and ophthalmological systems. The Foundation has funded research and treatment leading to the identification of the gene, possible gene therapies, and extended life expectancy as well as improved quality of life for those afflicted. In its short history, the Dysautonomia Foundation has made an incredible difference for these patients and their families. In addition, it raises awareness among the general population to identify carriers before they have children. My niece has this disorder and is now 23 years old, when her life expectancy at birth was only 10 years, thanks to the work of this non-profit and its devoted medical personnel, volunteers, and donors. My family is now able to be tested to determine if they are carriers, thanks to the work of the foundation. In addition, the foundation has made it possible for FD patients to be designated as developmentally disabled, giving them access to educational and social services. Even though this is a rare disorder, the scientific work of the foundation has applicability to understanding and helping other disorders and disabilities.

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When was your last experience with this nonprofit?

2012

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