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JOIN-HD Registry Reaches Milestone!

July 12, 2022

Huntington's Disease Youth Organization

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

www.hdyo.org

HDYO’s Juvenile Onset HD Global Registry (JOIN-HD) has pre-enrolled more than 50 patients and family members from 10 different countries. This is an exciting milestone as the registry just launched this past February. The aim of this registry is to locate and connect people impacted by JoHD, understand unmet needs and hopefully influence future research. Participants can participate from the comfort of their own homes and at their convenience.

This important milestone clearly shows the need and excitement for the Juvenile onset HD community to share their voices and experiences to further research and connect with other impacted families. With only opening enrollment in February, we are encouraged by the interest in our registry and will continue to champion for JoHD families. - Dr. Lauren Byrne, Chief Investigator of JOIN-HD.

Have you met the Scientific Oversight Committee? We are honored to have an incredibly committed SOC to support JOIN-HD including Dr. Martha Nance, Dr. Jean-Marc Burgunder, Dr. Leon Dure, Helen Santini, Dr. Oliver Quarrell, Dr. Benjamin Wilfond, Dr. Peg Nopoulos and Dr. Ferdinando Squitieri.

To learn more about JOIN-HD, email registry@hdyo.org.

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