RESOURCES
Huntington's Disease Youth Organization (HDYO)
A nonprofit volunteer organization that provides appropriate information and education, along with support for young people impacted by Huntington's disease.
Huntington’s Disease Society of America
A nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with Huntington’s disease and their families.
A search portal for rare disease and orphan drug information. Search for research projects, clinical trials, drugs, patient organizations, federations, and alliances. There is a helpline for personal queries.
Huntington’s Disease Foundation
“Raising awareness, supporting families, funding research, finding a cure.”
Family Caregiver Alliance is a community-based nonprofit organization that addresses the needs of families and friends who provide long-term care for loved ones at home. As a public voice for caregivers, FCA shines a light on the challenges caregivers face daily and champions their cause through education, services, and advocacy.
International Huntington's Association
The International Huntington's Association is an umbrella organization formed by Huntington’s disease (HD) associations all over the world. It represents more than 250, 000 individual members. Objectives are: to support and encourage collaboration across borders, to exchange knowledge and experiences, to motivate the HD community to participate in clinical trials, to raise awareness of HD, to impact health-authorities and governments in a positive manner, and to establish new National HD organizations
HOPES: Huntington's Outreach Project for Education, at Stanford
“HOPES is a student-run project at Stanford University dedicated to making scientific information about Huntington’s disease (HD) more readily accessible to patients and the public. Our goal is to survey the rapidly growing scientific and clinical literature on Huntington’s disease, and to present this information in a coherent, reliable web resource.”
Huntington’s Disease Lighthouse Families
“Since April 2000 the mission of the HD Lighthouse Families Web site is to present and explain the latest research findings so that families afflicted by Huntington's disease can become proactive in their care, have hope for the future, and make good decisions in the present. Additionally, we provide information that is vital to the support of HD families. Where possible we will direct you to specialists in your area of concern, but if we are able to provide better or more current information then you'll find it here.”
Huntington's disease research news in plain language. Written by scientists. For the global HD community.