Huntington Disease (cont.)
In this Article
- Huntington's disease facts*
- Introduction to Huntington's disease
- What causes Huntington's disease?
- How is Huntington's disease inherited?
- What are the symptoms and major effects of Huntington's disease?
- At what age does Huntington's disease appear?
- How is Huntington's disease diagnosed?
- What is presymptomatic testing?
- How is the presymptomatic test conducted?
- How does a person decide whether to be tested?
- Is there a treatment for Huntington's disease?
- What kind of care does an individual with Huntington's disease need?
- What community resources are available for Huntington's disease?
- What research is being done on Huntington's disease?
- How can I help?
- What is the role of voluntary organizations?
- Where can I get more information about Huntington's disease?
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:
P.O. Box 5801
Bethesda, MD 20824
Information also is available from the following organizations:
Hereditary Disease Foundation
New York, NY 10032
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
New York, NY 10018
Tel: 212-242-1968 800-345-HDSA (4372)
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
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