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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 Huntington's disease and their families.

Medically reviewed by Jon Glass, MD; American board of Psychiatry and Neurology

SOURCE: National Institute of Neurological Disorders and Stroke. Huntington's Disease: Hope Through Research. Last update: 8/13/2010


Medically Reviewed by a Doctor on 4/15/2014

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Huntington Disease - Experience Question: Please describe your experience with Huntington disease.
Huntington's Disease - Age Which Appear 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?
Source: MedicineNet.com
http://www.medicinenet.com/huntington_disease/article.htm

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