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 the partnership with MENA Organization for Rare Diseases that will 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 in the shadows of this disease. By doing so they 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. To participate you just need to send us a photo قراءة المزيد……
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, Portugal, Spain, Switzerland, UK and USA). It is starting on 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 hope the remaining trials and tests can bring some good 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. The newly created position will strengthen IHA’s work in relation 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.) After a brief pauseannounced this past August in patient enrollment قراءة المزيد……
September 20, 2022 at 7:30 AM EDT PDF Version Single doses of WVE-003 appear generally safe and well-tolerated CSF mutant huntingtin (mHTT) protein was reduced following single doses of 30 or 60 mg; mean mHTT reduction across both cohorts was 22% (median reduction 30%) from baseline 85 days post-single dose قراءة المزيد……
~ Treatment generally well-tolerated with no significant safety issues related to AMT-130 in treated patients through one year of follow-up ~ ~ A mean reduction of 53.8% of mutant HTT (mHTT) observed in cerebral spinal fluid (CSF) at 12 months in evaluable patients treated with AMT-130 ~ ~ Neurofilament Light قراءة المزيد……
ANNEXON BIOSCIENCES REPORTS PHASE 2 CLINICAL TRIAL RESULTS DEMONSTRATING UPSTREAM CLASSICAL COMPLEMENT INHIBITION ASSOCIATED WITH CLINICAL BENEFIT IN HUNTINGTON’S DISEASE On June 7, Annexon, that is a clinical-stage biopharmaceutical company developing a new class of medicines for patients with classical complement-mediated autoimmune, neurodegenerative and ophthalmic disorders, today announced promising, final قراءة المزيد……
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