About HDSA

The Huntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s Disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 200,000 at-risk in the United States.  Notably, HDSA founded the HDSA Coalition for the Cure, a collaboration of 16 international researchers, as part of the HD Drug Research Pipeline, and supports research which develops potential therapies to treat and eventually cure HD; and HDSA also supports 21 Centers of Excellence at major medical facilities throughout the U.S., where people with HD and their families receive comprehensive medical, psychological and social services, in addition to physical and occupational therapy and genetic testing and counseling. The Society is comprised of 54 local chapters and affiliates across the country with its headquarters in New York City. Additionally, HDSA hosts more than 170 support groups for people with HD, their families, caregivers and people at-risk, and is the premiere resource on Huntington’s Disease for medical professionals and the general public.

HDSA is a 501(c)3 not-for-profit organization recognized as a charity in good standing by the IRS(EIN: 133349872) and meets all the required high Standards of Excellence of the BBB Wise Giving Alliance, Community Health Charities, National Health Council and is proud to have an A rating from the American Institute of Philanthropy.

Visit our Living with HD Section for more information on HD resources.

Note: HDSA is a member of the National Health Council, National Organization of Rare Disorders,  and International Huntington Association.

Note: The resource information provided on this Website is for informational purposes only unless otherwise stated.

Inclusion on a particular list does not constitute a recommendation or endorsement by HDSA. Only those facilities or professional groups that are prefaced by "HDSA" are recognized by HDSA (i.e., HDSA Centers of Excellence, HDSA Social Workers, HDSA chapters or HDSA Support Groups).