Huntington's Disease Youth Organization

The Huntington's Disease Youth Organization is an international non-profit supporting, educating, and empowering young people up to 35 years, impacted by Huntington's Disease (HD).

For 15 years, HDYO has been building a future where young people impacted by Huntington’s disease (HD) are seen, heard and meaningfully included in the conversations shaping the HD community. Young people experience HD differently depending on where they are in their lives. They may be navigating genetic testing, relationships, family planning, education, careers, caregiving, clinical research or decisions about emerging treatments—all while experiencing the developmental and social milestones that come with growing into adulthood. As the HD therapeutic landscape evolves, ensuring that young people are informed and engaged is more important than ever.