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estimated 30,000 Americans have Huntington's disease (HD), a
hereditary degenerative brain disorder which usually manifests
in midlife. Here are some resources for individuals with HD,
families, friends, and researchers.
- Caring for People
with Huntington's Disease
by the Department of Neurology at the Kansas University Medical
Center and by Huntington's disease support groups, this site
includes information about patient abuse, behavioral issues,
communication strategies, disability issues, eating and swallowing,
genetics, home safety, organizations and support groups, suggestions
for safe sleeping arrangements, and more.
- Hereditary Disease Foundation
- The foundation
is a non-profit, basic science organization dedicated to the
cure of genetic disease; its main focus is Huntington's. The
web site provides information about testing issues, a reading
list, newsletters, and research funding information.
- Huntington Disease Society of America
information about the disease and the society. Includes lists
of chapters, residential care facilities, HD/movement disorder
clinics, research roster and DNA banks, brain tissue banks, genetic
testing centers, recent research developments, links, and more.
- Huntington's Disease Advocacy Center
- This extensive
site provides information for caregivers, those at risk, and
those that have tested positive for HD. In addition, support
is offered via chat rooms, message boards, and listservs, and
a list of places to go for help. "Stories and articles of
information based on personal experiences or professional research
by caregivers and professionals who've 'been there'" are
also included. While it's not quite clear what the HDAC is, it's
clearly up-to-date, noncommercial, and compiled with love.
- Huntington's Disease
Davis, a librarian with an interest in this disorder, recently
resumed working on this nicely organized website, which includes
a wide variety of articles, reports, personal stories, book reviews,
etc., as well as annotated links to outside resources.
- The Huntington's
- This website
by Jerry Lampson is well-organized and packed with information,
especially news articles and reports. Many of the items are from
the HUNT-DIS listserv and forum.
- It's Tomorrow Now (Huntington Society
- The home
of the Huntington Society of Canada, this bilingual (English/French)
website provides information about the disease and living with
it, research, Canadian and international connections, and organizational
- Movement Disorders
- Neurological Disorders
- Rare Disorders
- Resources in your state
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