Where can I refer families to for information about HD, subspecialty care, and about participating in clinical trials?
The Huntington’s Disease Society of America (HDSA) publishes extensively on every aspect of HD, including information useful for affected families as well as for health care professionals. HDSA periodicals inform about current clinical and research issues. In addition, the HDSA maintains an information line (800-345-HDSA) and is able to make referrals to local HDSA chapters, genetic testing centers, and HD clinics. The HDSA also supports a growing network of regional HD specialty clinics through its Center of Excellence Program and funds basic and clinical research through several funding mechanisms. Their web site has links to many related web sites and chat rooms. Regional HDSA chapters are local sources for referrals, educational materials, family services, support groups, and advocacy. The Hereditary Disease Foundation (HDF) stimulates and supports research aimed at basic mechanisms and treatment discovery and maintains an extensive web site especially focused on basic and preclini
