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Category: Uncategorized
Gratitude Day 2024
March 23, 1993 is the date when the mutation that causes Huntington’s disease was first published. We launched Gratitude Day as a way of honoring the families who made this discovery possible. […]
EHDN Newsletter – 51st edition
The EHDN newsletter (archive) aims to communicate the network’s activities and other developments of interest in the field of Huntington’s disease to the lay community, healthcare professionals and scientists. It appears three times a year (March 1, July 1, Nov 1). To receive EHDN news going forward, please subscribe to the EHDN news at the […]
29 February is Rare Disease Day
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Call for Nominations 2024
We are seeking nominations for the EHDN Executive Committee (EC). If you are interested in being part of the EC, or would like to nominate somebody, […]
Roche-EHDN Virtual Meeting – 12Feb2024
On February 12, 2024, the EHDN has hosted a virtual platform meeting on the Generation-HD1 trial to discuss the previously published data. The video of this meeting is available. […]
TEDxBath: The Unlimited Capability of Every Human
Charles Sabine’s talk represents his personal experience with and understanding of Huntington’s Disease. [available since Feb 8, 2024] […]
EHDN virtual platform meeting: Tominersen – GenHD1 data and beyond
On February 12, 2024, at 16:00 CET (15:00 GMT), EHDN will be hosting a virtual platform meeting to discuss the recently published data on the Generation-HD1 trial (read more). The conference will consist of a presentation by the sponsor, Roche, followed by a Q&A session and a discussion by a panel on open (and answered) […]
EHDN/MDS (ES) FELLOWSHIP NOW OPEN FOR APPLICATIONS
Are you a young/recently qualified clinician interested in learning more about HD? Click here for further details. […]
Announcement: GENERATION HD1 study results published
GENERATION HD1 – This Phase 3 trial was stopped in March 2021 following a benefit–risk assessment by an independent data monitoring committee. A letter published 07/12/2023 in the New England Journal of Medicine (DOI: 10.1056/NEJMc2300400) details ad hoc analyses conducted on the week 69 data. Findings suggest that younger participants with lower disease burden may […]