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Resources on the Web
- Huntington's Disease Society of America Home page of the national HDSA with links to various HDSA chapters.
- Huntington's Disease Information Page Written and published by the National Institute of Neurological Disorders and Stroke (NINDS). Comprehensive brochure about HD and research progress.
- Huntington's Disease Advocacy Center
- HOPES: Huntington's Outreach Project for Education Faculty and students at Stanford University "making scientific information about Huntington’s disease (HD) more readily accessible to the public."
- Facing Huntington's Disease: a Handbook for Families and Friends This publication from the UK is a basic guide and introduction to HD.
- Huntington's Disease Forum From Massachusetts General Hospital, the Neurology Web-Forum for interactive online discussions. An open forum of questions and comments related to HD.
- Huntington Study Group Non-profit group of physicians and other health care providers in the U.S., Canada, Europe and Australia experienced in the care of Huntington patients and dedicated to clinical research of Huntington's disease.
- Huntington's Disease Information An excellent compilation of Internet resources by librarian Renette Davis
- Caring for People with Huntington's Disease A publication of the Kansas University Medical Center Department of Neurology. Deals specifically with care issues.
- The Huntington's Disease Lighthouse - Subtitled "information and community," the HDL newsletter-type site is a volunteer effort that hopes to assist in proactive treatment and care of Huntington's Disease. Includes a handy news-searching page, Wuf Fetch-Breaking Huntington's Disease News.
- Huntington's Disease Advocacy Center - "For HD families, by HD families." Includes chat and message board, personal stories, and humor.
- The Hereditary Disease Foundation Read about the Crucial Turning Point in the Quest for a Cure for Huntington's Disease and the Cure HD Initiative and the idea behind it.
- Information on Huntington's Disease From the Baylor College of Medicine Department of Neurology Huntington's Disease clinic. Abstracts of papers from the Huntington's Disease Workshop, Houston, TX, 2/16/96.
- Your Genes, Your Health: A Multimedia Guide - Huntington Disease
- Huntington's Disease Genetic Testing - A collection of articles, stories and information for people considering being tested for Huntington's Disease, from Jean Miller's
Huntington's Disease Information.
- International HD sites: Huntington Society of Canada | Northern Ireland HD | Huntington's Disease Association of Ireland | UK Huntington's Disease Association | Scottish Huntington's Association | Australian Huntington's Disease Association | Huntington's Scene in New Zealand
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The National Research Roster for HD Patients and Families is a nationwide registry and information resource dedicated to assisting scientific research on HD. The Roster identifies HD patients and families who are interested in participating in research projects to help scientists learn more about HD. The Roster has involved nearly 3,000 families in HD research.
The Indiana University DNA Bank was established as the world’s first DNA bank in 1984. The DNA bank was created so that individuals and families could store DNA samples that may be needed for future genetic testing.
For more information about the Roster or the DNA bank, please visit http://hdroster.iu.edu or contact the coordinator by calling (317) 274-5744 or email
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