EHDN statement on the discontinuation of the GENERATION HD1 trial

On Monday 22 March 2021 Roche announced that dosing is being permanently discontinued in the GENERATION HD1 phase III trial evaluating the effect of tominersen, an ASO-based huntingtin lowering drug on the clinical course of HD. Dosing is also being paused on the open label extension study, GEN-EXTEND. This decision is the outcome of a […]

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ERN-RND webinars

ERN-RND provides free educational webinars on rare neurological and neuromuscular diseases – in collaboration with the European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) and the European Academy of Neurology (EAN). The goal is to share knowledge on rare neurological, movement and neuromuscular disorders via a series of webinars presented by expert members of both […]

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Dancing at the Vatican

Dancing at the Vatican is an inspirational documentary telling the story of a seemingly impossible journey made by families bound by the same devastating, genetically inherited disease, Huntington’s. Leaving the poorest corners of Latin America for the first time, they make it to Rome; not just to a Papal audience, but other, unimaginable, surprises. The […]

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