Huntington Disease (cont.)
What is the role of voluntary organizations?
Private organizations have been a mainstay of support and guidance for at-risk individuals, people with HD, and their families. These organizations vary in size and emphasis, but all are concerned with helping individuals and their families, educating lay and professional audiences about HD, and promoting medical research on the disorder. Some voluntary health agencies support scientific workshops and research and some have newsletters and local chapters throughout the country. These agencies enable families, health professionals, and investigators to exchange information, learn of available services and benefits, and work toward common goals. The organizations listed on the Information Resources card in the back pocket of this brochure welcome inquiries from the public.
Where can I get more information about Huntington's disease?
For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:
BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov
Information also is available from the following organizations:
Hereditary Disease Foundation
3960 Broadway
6th Floor
New York, NY 10032
cures@hdfoundation.org
http://www.hdfoundation.org
Tel: 212-928-2121
Fax: 212-928-2172
Non-profit basic science organization dedicated to the cure
of genetic disease. All publicly donated funds are directed toward the support of biomedical research.
Huntington's Disease Society of America
505 Eighth Avenue
Suite 902
New York, NY 10018
hdsainfo@hdsa.org
http://www.hdsa.org
Tel: 212-242-1968 800-345-HDSA (4372)
Fax: 212-239-3430
Dedicated to finding a cure for Huntington's Disease while providing support and services for those with HD and their families.
SOURCE: National Institute of Neurological Disorders and Stroke
Last Editorial Review: 5/13/2008
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