Information to Request
The Chapter makes its library of publications, video tapes, and audio tapes available to the public. If interested in reviewing or receiving any of these materials, please contact the Chapter at (609) 448-3500. The Chapter provides most materials free of charge. Additional materials are also available at HDSA’s National Web site.
Internet Links.
The national organization’s Web site.
The Hereditary Disease Foundation run by Nancy Wexler.
www.kumc.edu/hospital/huntingtons
Titled “Caring for People with HD.” Dr. Richard Dubinsky’s site has great information on care.
The website discloses ways to increase awareness concerning HD.
www.ninds.nih.gov/disorders/huntington/huntington.htm
National Institutes of Health website concerning HD.
One of the most comprehensive and up-to-date sites on HD treatments and research.
Huntington’s Disease Advocacy Center. Articles, columns, and other helpful information on HD produced by and for families dealing with HD. Includes chat rooms and message boards.
HD news and commentary from Dave, who created the first Blog dedicated to HD. Includes regular commentary and research updates.
A grass-roots volunteer group of patients and their families, who believe that stem-cell research could save the lives of people suffering from “hopeless” diseases.
A comprehensive site providing information on caregiving sponsored by the Family Caregiver Alliance.
Huntingtons-Disease-Helping-Hands
A short video about folks with advanced stage HD.
National Research Roster for Huntington Disease Patients and Families (HD Roster) located at Indiana University. The HD Roster has been funded by the National Institute of Health since 1979 and is a unique nationwide information resource dedicated to facilitating scientific research on Huntington disease.