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Resources for Families with HD

There are various weblinks with a lot of information for finding out more about Huntington’s disease:

References for Kids and Young Adults

The HD Lighthouse—is full of useful information and links about Huntington’s disease.

The Huntington's Disease Society of America—has an abundance of resources for families seeking movement disorder clinics, long-term care facilities, genetic counselors, social workers, self-help and support groups listed by state.

Huntington Society of Canada—a national network of volunteers and professionals united in the fight against HD since 1973. Their goal is to find new treatments and ultimately a cure for Huntington disease, and to improve the quality of life for people with HD and their families. Their website offers information in both English and French.

The Huntington Study Group (HSG) website is a good place to look to see what clinical trial for Huntington's disease are taking place. HSG is a non-profit group of physicians and other health care providers from medical centers in the U.S., Canada, Europe and Australia, experienced in the care of Huntington patients and dedicated to clinical research of Huntington's disease. They're the group that oversee all clinical trials for Huntington's disease. Check their website regularly for current information about ongoing clinical trials. This would be the place to look to see the results of any new treatments possibilities.

International Huntington Association (IHA)—a federation of national voluntary health agencies that share common concern for individuals with Huntington's Disease (HD) and their families. Each agency promotes lay and professional education; individual and family support; psycho-social, clinical and biomedical research; and ethical and legal considerations related to Huntington's Disease in its respective country. A list by country of available services can be found through the “Addresses” link on this site.

The National Institutes of Health (NIH) has published an informative booklet about "Huntington's Disease: Hope Through Research."

Wikipedia a thorough explanation about Huntington's disease.

WeAreHD.org is the place for people living with Huntington’s Disease. Share, talk, communicate in a user led social network for individuals, family members and those members of the community. Share the wealth of your experience and plan for the future with those like you. Find others with similar interests and goals.

The Journal of Huntington's Disease—is an international multidisciplinary journal to facilitate progress in understanding the genetics, molecular correlates, pathogenesis, pharmacology, diagnosis and treatment of Huntington's disease and related disorders. The journal is dedicated to providing an open forum for original research in basic science, translational research and clinical medicine that will expedite our fundamental understanding and improve treatment of Huntington's disease and related disorders.

Other resources:

The Movement Disorder Society—an international professional society invested in the research and care of patients with Movement Disorders, including Parkinson’s disease, Parkinsonism, Dystonia, Chorea, Huntington’s disease, Ataxia, Tremor, Myoclonus, Startle, Tics, Tourette syndrome, Restless legs syndrome and Gait disorders.

Missouri Coalition for Lifesaving Cures—the official coalition of patient groups, medical organizations and citizens supporting Amendment 2: The Stem Cell Research and Cures Initiative.

The National Research Roster for Huntington Disease Patients and Families—established in 1979 at Indiana University. The goal of the Roster is to help researchers learn more about Huntington's disease. To accomplish this goal, the Roster has involved nearly 3,000 families in Huntington's disease research.

The Venezuela Huntington's Disease Project—Since 1979, the U.S.-Venezuela Collaborative Research Project, a team led by Hereditary Disease Foundation President Nancy Wexler and comprised of top international doctors and scientist, has been traveling each year to very poor, rural fishing villages along the shores of Lake Maracaibo, Venezuela to study to world largest family with HD. The mission is to find treatments and cures for HD.

Heather's Huntington's Disease Page—A positive, comprehensive website including a blog, care giving tips, ways to fight brain fog, myths, a personal family story, and ways to have a positive testing experience, written by a 24 year old woman who is experiencing HD symptoms.