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What people say about us
Enroll-HD: 10 Years Observing HD
– March 15, 2023
Enroll-HD is the world’s largest observational study being conducted in HD. This study is promoted by the CHDI Foundation, Inc. to speed up the development of effective treatments for Huntington’s Disease. Enroll-HD aims to observe and monitor how HD affects people and how it changes over time. It is focused on collecting a huge amount of demographic, clinical and biological information from the worldwide HD community with three specific goals: enhance the understanding of HD, support clinical trials and improve clinical care.
JOIN-HD: A platform for Juvenile HD
– March 9th, 2023
JOIN-HD is a worldwide registry for families affected by Juvenile onset Huntington’s Disease (JoHD), which aims to shed light on this diagnosis, bring together those impacted by JoHD, increase awareness and knowledge about this condition, facilitate research and help advocate for better care.
Juvenile onset Huntington’s Disease is diagnosed when a 20-year-old person or younger develops unequivocal HD symptoms.
Roche GENERATION HD2: giving Tominersen a second chance
– February 14th, 2023
After a hard setback in March 2021, when Roche stopped the GENERATION HD1 trial because of potential safety issues, the company is now fully prepared to give its huntingtin-lowering drug, Tominersen, a second chance.In fact, at the end of 2021, a comprehensive data analysis led Roche to conclude that the drug seemed to have benefited younger people who began the trial in earlier stages of HD.
"Huntington's Disease Heroes" the newest book added to our Bookshelf section
– February 28th, 2023
The goal of this book is to share inspiring stories from the underrepresented HD community. We will meet true heroes who fight every day the fear and stigma surrounding Huntington’s disease. By sharing how their lives were shaped by the challenges they have faced, the authors want to empower the rare disease community and encourage others to speak up.
"Uncomplicating HD Research": Videos of the 2nd Moving Forward Meeting in Valencia
– January 17th, 2023
In November 2022, we have organized the 2nd Moving Forward meeting in Spain. We were lucky to have with us several clinicians and researchers strongly committed to Huntington’s Disease, who work round the clock to find the best therapies to improve the quality of life of all those impacted by this disease.
New Online Psychological Support Service in Spain
– January 10th, 2023
The second Moving Forward meeting in Spain that happened earlier this month in Valencia was the stage to announce the launching of a new Moving Forward service for the Spanish HD community – an online psychological support service exclusively dedicated to people at risk for HD and people with premanifest HD