Specialized Information and Referral

The society provides health services related to Huntington's Disease (HD) for the public. This is the national office and administrative location of the organization. Services include specialized information and referral, advocacy, research and education, and support groups. There are no geographic restrictions.

HD is an inherited, progressively degenerative brain disorder which results in the loss of both mental capability and physical control. There is no known cure but genetic testing of family members for the HD gene is available.

Specialized information and referrals include Patient and Family Services; a nationwide network of services and referral to assist families and people with HD. In California, three social workers are employed by the chapters and Centers of Excellence of the HDSA as a resource for HD families. Services are provided on an individual basis and support groups are held regularly around the state. Information and referral to local support groups, social workers, physicians, nursing homes and a variety of other resources.

The agency provides support of research into the causes, treatment and cure of HD. It also provides advocacy for people who have the disease and their families and provides education about the disease through the dissemination of timely written materials that are available to the general public, HD families and the professional health community.