This month, the Movement Disorders Policy Coalition is pleased to highlight the Huntington’s Disease Youth Organization (HDYO). HDYO is an international non-profit supporting, educating, and empowering young people up to 35 years, impacted by Huntington's Disease (HD).
“We at the Huntington’s Disease Youth Organization aim each day to empower young people with Huntington’s disease to be their own advocate.” said Jenna Heilman, HDYO Executive Director. “We are grateful to partner with Movement Disorder Policy Coalition to educate and provide better resources to patients and their families.”
Huntington’s Disease Youth Organization consists of patients, caregivers, family members, health care professionals, educators, and community business leaders. Their mission is to support research and provide resources on how to understand this complex disease.
The organization provides a number of online and in-person resources in different languages for a range of age groups to provide age-appropriate materials to show that no one is alone who is impacted by HD. They are actively involved in social research programs and getting patients involved in research and clinical studies. HDYO has also launched the JOIN-HD registry, which is a global registry for patients and families directly affected by Juvenile-onset HD.