At last year’s EHDN & Enroll-HD Conference in Strasbourg, we had the privilege of interviewing Siri Hagen Kjølaas, Ph.D., to discuss her groundbreaking research on the psychosocial challenges
PRESS RELEASE – October 25, 2024, Moscow, Idaho, USAWe are pleased to announce the launch of a new book about Huntington’s disease (HD) called, Livable Lives: Conversations with
I belong to the third generation of a family affected by Huntington’s Disease, but it wasn’t until 2024, thanks to the tireless efforts of my second father, F.
Help 4 HD Live! is the first international radio program ever created for the Huntington's disease community. Help 4 HD Live! was the first radio show created specifically for the Huntington’s disease community. With thousands of international listers, we continue to deliver credible education, information, and resources to our global HD community, care providers, and peers.
Charlie, creator of You, Me and HD describes the blog: "You, Me and HD isn't just here to tell my story, I hope through speaking out will help me connect to others suffering as a result of HD. I hope this educates people and helps them look beyond the facts in font in front of them.. I also want a safe place anyone can come to and be heard especially those having to make the choice to be tested and coming to terms with their results and indeed their future."
Huntington’s disease has been steeped in secrecy and fear for generations, leaving people in the community without a voice. This book changes that. Twenty-six people from nine countries bravely share their personal stories about living in the shadows of this disease. By doing so they are saying: Here I am. I will not be kept silent
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