Arches. Photo by Daniel Chia
HOPES: Huntington's Outreach Project for Education, at Stanford
Aug
02
2011

Helpful Links

Here is a list of other online resources for people with HD, their families, and caregivers. They are loosely organized into categories based on what they focus on most.

Living With HD^

  • The Huntington’s Disease Society of America (HDSA) is a national organization that works to improve the lives of people with HD and their families. Their website has a wealth of information on how to manage symptoms and live with the disease, with advice on how to find support groups and nursing homes. The HDSA compiles an extensive list of online resources aimed at helping people manage HD, found here.
  • HDLighthouse has information on research updates and drugs in the pipeline. They also have an active online forum for people to share thoughts, questions, and experiences.
  • Huntington’s disease Advocacy Center (HDAC) is a forum for people to share their experiences with HD, be it as a family member, a caregiver, or a person who has the disease. They also have research updates, and an active political advocacy page.
  • The Cure HD blog is written by an HD-positive activist who goes by the pseudonym Gene Veritas. He writes about events in the HD community, with a focus on relevant political events.

Research^

  • HDBuzz has fast, easy-to-read updates on HD research, written by doctors and scientists.
  • HD drugworks provides information on the drugs available for treating the symptoms of HD, and updates on drug development and clinical trials.
  • The Huntington Study Group is a group of researchers that conducts clinical trials aimed at learning more about HD, and finding drugs that might help patients with the disease.
  • The Hereditary Disease Foundation aims to cure genetic diseases by supporting basic biomedical research, and has updates on HD research initiatives.
  • The National Roster for HD Patients and Families is a way for HD patients and families to get involved in research. People who wish to participate in clinical trials can be added to the roster, which helps physicians and scientists contact people with HD and organize trials.
  • HD Trials is another way for people with HD to sign up for clinical trials.

Other Countries^