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Huntington's Disease: Hope Through Research

Introduction
What Causes Huntington’s Disease?
How is HD Inherited?
What are the Major Effects of the Disease?
At What Age Does HD Appear?
How is HD 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 HD?
What Kind of Care Does the Individual with HD Need?
What Community Resources are Available?
What Research is Being Done?
How Can I Help?
What is the Role of Voluntary Organizations?
Glossary
Information Resources
 
Huntington's Disease: Hope Through Research
National Institute of Neurological Disorders and Stroke
(NINDS 1998)
 
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 in the Information Resources section of this brochure welcome inquiries from the public.

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