In a key breakthrough, the MENA Organization for Rare Diseases and the International Huntington Association signed a memorandum of understanding during the MENA Organization for Rare Diseases annual meeting 2023, March 3-5, Dubai. “The International Huntington Association looks forward to قراءة المزيد……
Huntington’s Disease has been steeped in secrecy and fear for generations, leaving people in the community without a voice. This book changes that. Huntington’s Disease Heroes features twenty-six people from nine countries who bravely share their personal stories about living قراءة المزيد……
Join our campaign for Rare Disease Day! February 28th is Rare Disease Day, where the rare community comes together, finds support and raises awareness for rare diseases across the globe This year we want you to join the #LightUpForRare campaign. قراءة المزيد……
Svein Olaf Olsen, President of the International Huntington Association, interviews Maaike, an example of strength and hope, with a moving story.
Roche/ Genentech announce that Phase II GENERATION HD2 study is now open. This is great news for the international community since it is planned to run in 15 countries (Argentina, Austria, Australia, Canada, Denmark, France, Germany, Italy, New Zealand, Poland, قراءة المزيد……
Novartis shared today the difficult news that they are stopping the VIBRANT-HD study of Branaplam, after some participants devoloping side effects. Read the full Novartis letter Even if this news can be disappointing, the HD Community will keep positive and قراءة المزيد……
IHA interviews Robert Pacifici from CHDI IHA interviews Robert Pacifici from CHDI IHA interviews Robert Pacifici from CHDI IHA interviews Robert Pacifici from CHDI Svein Olaf Olsen, President of the International Huntington Association, interviews Robert Pacifici, the Chief Scientific Officer قراءة المزيد……
International Huntington Association has received a very generous donation. A Norwegian donor is behind the donation. He wishes to remain anonymous. The money is earmarked for a new position at IHA’s office in Lisbon and is given under this condition. قراءة المزيد……
Have you heard of the Joyvest by Lyckna? It’s an activity vest that plays music when you move! Carina, from the Huntington’s Disease Association (RHS) in Sweden makes a demonstration. This is a physical therapy, highly recomended for working and قراءة المزيد……
A Message to the Huntington’s Disease Community from uniQure Dear Huntington’s Disease Community Members, This morning, uniQure issued a press release which included an update on our clinical trial ofAMT-130 (the name of the study drug) for Huntington’s Disease (HD.) قراءة المزيد……
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