Huntington Disease (cont.)
In this Article
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:
Information also is available from the following organizations:
Hereditary Disease Foundation
Huntington's Disease Society of America
SOURCE: National Institute of Neurological Disorders and Stroke. Huntington's Disease: Hope Through Research.
Last Editorial Review: 8/13/2010
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