An 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.
Supported 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.
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.
Provides 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.
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.
Renette 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 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 information.