Familial Dysautonomia
Dysautonomia Foundation
212-279-1066
http://www.familialdysautonomia.org/
315 W 39th St
Suite 701
New York, NY 10018
The Dysautonomia Foundation (DF) is a national, non-profit organization founded in 1951 by parents of children with familial dysautonomia, a rare genetic disorder characterized by dysfunction of the autonomic nervous system (ANS). Symptoms and findings may include absence of pain sensation, defective secretion and discharge of tears, unusual fluctuations of body temperature, unstable blood pressure, skin blotching, impaired coordination, abnormally decreased reflex responses, and/or other abnormalities. The foundation has chapters located throughout the United States, Canada, the United Kingdom, and Israel. It provides informational materials and supports ongoing medical research and the clinical care of children with this disorder by maintaining the Familial Dysautonomia Treatment and Evaluation Center at New York University Medical Center in New York City and the Israeli Familial Dysautonomia Center at Hadassah Hospital in Jerusalem. In addition, the foundation is dedicated to funding medical research.
Dysautonomia Youth Network of America
3017056995
1301 Greengate Court
Waldorf, OR 20601
The Dysautonomia Youth Network of America, Inc is a non profit organization who works to improve the lives of young Dysautonomia patients and their families; foster awareness, support, and a better understanding of Dysautonomia conditions in the community; and to encourage passionate care, efficient diagnosis, reliable treatment, and research of Dysautonomia conditions. Dysautonomia is a medical term often utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS).
Familial Dysautonomia Hope Foundation
Tel: 919-969-1414
Fax: 919-969-1415
National Dysautonomia Research Foundation