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JOIN-HD New Enhanced Platform

March 18, 2024

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


The JOIN-HD Registry is a global registry to understand the experiences of caregivers and children impacted by Juvenile HD. This registry is extremely important to bring the JHD community together while also advocating for research that is so desperately needed.

New Registry Platform As JOIN-HD moves into Stage 2 this Fall, we are thrilled to announce that we have started a new partnership to bring an interactive and accessible platform to this important project. Matrix is a shared platform to help care for and cure rare diseases that was developed by someone who has a rare disease himself. Matrix allows us to enhance the experience of our participants and our research initiatives through a variety of ways:

  • Offers multiple languages

  • Allows families to have one place to manage their healthcare needs

  • Has metric tools like symptom trackers so we can better understand JHD’s impacts

  • Creates a community that we can distribute information about resources and future clinical trial opportunities

  • Increased user-friendly experiences with a mobile-friendly interface

  • And more

Timeline We are in the process of building the platform for JOIN-HD, migrating data from Stage 1, finalizing Stage 2 details including the questionnaires and ethics and securing more global partnerships including adding in other advocacy organizations to our planning team. We hope to launch Stage 2 later this Fall.

If you would like to know more about the JOIN-HD Registry or want to get involved, email registry@hdyo.org.

JOIN-HD New Platform

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