On 28 April 2026, PTC Therapeutics hosted a webcast outlining results of the 24-month interim analysis of the PIVOT-LTE long-term extension study of votoplam (formerly PTC518). Following the 12-month randomised placebo-controlled PIVOT-HD trial, participants were eligible to continue to the long-term extension. Participants already receiving 5 mg or 10 mg of votoplam continued with the […]
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12th Congress of the European Academy of Neurology – Geneva
27 – 30 June 2026: The EAN Congress is one of the leading neurology events worldwide, a hybrid annual meeting uniting clinicians, researchers, educators, industry partners, residents, students, and patient representatives for four days of science and education. […]
EHDN Imaging Working Group (iWG) newsletter – edition 5
The EHDN Imaging Working Group has now produced its fifth newsletter. The newsletter provides relevant updates on imaging studies, research advancements, and innovative techniques in neuroimaging. Imaging Working Group (iWG) NEWSLETTER Edition 5 | March 2026 […]
HD Gratitude Day: 23 March 2026
Dear Friend of EHDN, Each year, the HD community comes together to celebrate and express gratitude for the unique collaboration between HD families, clinicians, and scientists that continues to drive progress in Huntington’s disease research and care. We are delighted to share details of HD Gratitude Day 2026 with a letter from Jimmy Pollard and […]
EHDN Newsletter – 57th edition
EHDN News provides regular updates on the network’s activities and highlights key developments relevant to the Huntington’s disease community. The newsletter is published three times a year (March, July and November). We welcome your comments, suggestions and feedback. Please get in touch at newsletter@ehdn.org or contact Catherine Deeprose, Editor. To receive EHDN News directly in […]
Rare Disease Day 2026
28 February is Rare Disease Day rarediseaseday.org […]
Hoffmann-La Roche POINT-HD study endorsed* by EHDN
Study aims and goal: A Study to Evaluate the Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of RG6496 in Huntington’s Disease. No. of study participants and sites: The study plans to enrol participants from 2 sites in Australia and New Zealand. For further information see the clinical trial registration. *EHDN endorsement: The EHDN endorses protocols it finds […]
Novartis Pharmaceuticals INVEST-HD study endorsed* by EHDN
Study aims and goal: Phase III study to investigate the efficacy, safety and tolerability of Votoplam in participants with Huntington’s Disease. No. of study participants and sites: It is planned to enrol 770 participants globally. The number of sites and countries is still to be determined. For further information see the clinical trial registration. *EHDN […]
CHDI’s 21st Annual Huntington’s Disease Therapeutics Conference
… to be held February 23 through 26, 2026 in Palm Springs, California. The emphasis of this conference is preclinical research relevant to drug development for HD, including the latest advances in understanding HD pathophysiology, current and emerging biomarkers, and novel therapeutic approaches. Conference Details […]
EHDN Platform Meeting (Webinar) –
Is it time to target inflammation in Huntington’s disease?
Evidence supports inflammation playing a role in Huntington’s disease pathogenesis. The mutant huntingtin protein disrupts immune cell function, centrally and peripherally. Long before symptom onset, activated microglia and astrocytes can be detected and levels of pro-inflammatory molecules like IL-6 and TNF-α are found increased in CSF and plasma. Far from being just a byproduct of […]