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:
BRAIN 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 Patient CommentsViewers share their comments
Huntington's Disease - Share Your Experience
Question: Have you or a friend been affected by Huntington's? Please share your experience.
Huntington's Disease - Symptoms
Question: What were the symptoms associated with Huntington's disease in you or someone you know?
Huntington's Disease - Testing and Diagnosis
Question: Have you ever been tested for or diagnosed with Huntington's? Please share your experience.
Huntington's Disease - Family History
Question: Do any relatives have Huntington's disease? Have you or other relatives had presymptomatic testing?
Huntington's Disease - Treatment
Question: What kinds of treatment, including medications, have you or someone you know received for Huntington's?
Huntington Disease - Experience
Question: Please describe your experience with Huntington disease.
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