While Huntington’s Disease (HD) most frequently begins in adulthood, it can occur at any age – young or old. When someone who is 20 or younger develops HD symptoms, they are classed as having Juvenile onset Huntington’s Disease (JoHD). You can find out more about JoHD in our basics of JHD article.

What is JOIN-HD?

JOIN-HD is a global registry for families affected by Juvenile onset Huntington’s Disease. Open to people who have JoHD and their caregivers, all the information added to the registry will help increase understanding of JoHD. This will allow us to advocate for improvements to care, research and awareness. We hope JOIN-HD will be a platform that will encourage other scientists and clinicians to carry out much needed research into this devastating disease.

Goals of JOIN-HD

  • Build a global community of families impacted by JoHD.
  • Increase knowledge of JoHD.
  • Facilitate future research.

How Do We Get Involved?

If you would like to participate in JOIN-HD, please read the Participant Information Sheet and pre-register. If you have any questions about JOIN-HD, you can get in touch by emailing registry@hdyo.org.



This registry is only possible with the generosity of donors and support from sponsors. If you’re interested in learning more, contact registry@hdyo.org