Blog Section

HD in North America

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.
  • 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

  • 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.