Welcome to JOIN-HD

What is JOIN-HD?

JOIN-HD is a global registry for families to share their experiences about living with Juvenile Huntington’s Disease (JHD).

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How to Participate

JOIN-HD is an online registry featuring several surveys for the JHD community.

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Family Impact of JHD

From changing dynamics to long diagnostic journeys, families are forever changed by JHD.

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Become an Advocacy Partner

The need to support and understand the global HD community is crucial for families. Help us create a global movement.

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Become a Research Partner

There is currently little to no focus on JHD research. We want to empower researchers to focus on this underserved community.

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Pre-Registrants
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The global registry for Juvenile onset Huntington’s Disease

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These goals cannot be done by just a few people by themselves. The JHD community needs as many partners working together as possible to reach families, encourage participation, help us develop resources and much more.