EHDN News
European Huntington's Disease Network newsletter. Editor: Catherine Deeprose. Views are my own and RTs are not endorsements. Email: newsletter@ehdn.org
- The EHDN Platform Meeting 𝐮𝐧𝐢𝐐𝐮𝐫𝐞 𝐭𝐨𝐩𝐥𝐢𝐧𝐞 𝐫𝐞𝐬𝐮𝐥𝐭𝐬: 𝐮𝐧𝐩𝐚𝐜𝐤𝐢𝐧𝐠 𝐭𝐡𝐞 𝐨𝐮𝐭𝐜𝐨𝐦𝐞𝐬 𝐬𝐨 𝐟𝐚𝐫 took place on 18 November. We are very grateful to our amazing speakers and panellists. Catch up by watching the recording: www.youtube.com/watch?v=wKj1... & reading the full report: ehdn.org/wp-content/u...
- The 56th issue of EHDN News is now online: ehdn.org/wp-content/u... Highlights include an interview with EHDN's Chief Operating Officer, Jamie Levey, and coverage of the European Huntington Association conference in Bucharest!
- EHDN is hosting a Platform Meeting in collaboration with HDYO and EHA titled 𝑢𝑛𝑖𝑄𝑢𝑟𝑒 𝑡𝑜𝑝𝑙𝑖𝑛𝑒 𝑟𝑒𝑠𝑢𝑙𝑡𝑠: 𝑢𝑛𝑝𝑎𝑐𝑘𝑖𝑛𝑔 𝑡𝘩𝑒 𝑜𝑢𝑡𝑐𝑜𝑚𝑒 𝑠𝑜 𝑓𝑎𝑟 on 𝟏𝟖 𝐍𝐨𝐯𝐞𝐦𝐛𝐞𝐫 at 𝟏𝟕:𝟎𝟎-𝟏𝟖:𝟑𝟎 𝐂𝐄𝐓. Åsa Petersén will chair the event and include presentations by Anne Rosser and Sarah Tabrizi. Register here: lnkd.in/dNdPNwxJ
- Exciting opportunity at EHDN for a Clinical Research Associate/Language Area Coordinator – Netherlands and Flanders part-time: 60-80% Find out more here: ehdn.org/about-ehdn/c...
- 🌟 HD clinical fellowship programme is open 🌟 The EHDN and MDS-ES Huntington's Disease Fellowship Programme 2026 is now open for applications! 📅 Application Deadline: December 15, 2025, 17:00 CET 📧 Further information: ehdn.org/hd-clinician...
- Reposted by EHDN News[Not loaded yet]
- *Statement from EHDN Chairs on uniQure’s Topline Results* EHDN Chairs Patrick Weydt (University of Bonn) and Åsa Petersén (Lund University) share the excitement of the HD community in welcoming the topline results from uniQure’s phase 1/2 study of AMT-130: ehdn.org/statement-fr... #Huntingtons
- Reposted by EHDN News[Not loaded yet]
- With the #huntingtonsdisease community, we are thrilled to hear uniQure's exciting topline results for their Phase 1/2 study of AMT-130: uniqure.gcs-web.com/node/12261/pdf For information on all ongoing and completed EHDN-endorsed studies click here: ehdn.org/previous-ong...
- Applications for the EHDN & MDS-ES Fellowship Programme '26 open on 1 Oct. Selected fellows will spend 6 weeks in a European multi-disciplinary HD clinic. Priority will be given to applicants from underserved regions with regard to HD care or with specific HD training needs: ehdn.org/hd-clinician...
- EHDN's Lesley Jones Seed Fund is now open for applications. Find out more here: ehdn.org/hd-clinician...
- Reposted by EHDN NewsWebinar: Could DNA repair hold the key to treating Huntingtons disease?🧬 Join UK DRI Group Leaders Profs Sarah Tabrizi & Gabriel Balmus as they dig into the latest discoveries and therapeutic breakthroughs from the field 🗓️ Mon 29 Sep 🕓 4-5pm (BST) Register free 👉 www.ukdri.ac.uk/events/rethi...
- Reposted by EHDN News[Not loaded yet]
- Reposted by EHDN NewsApply now for a Churchill Fellowship @churchillfship.bsky.social : a once in a lifetime chance to explore global ideas, grow personally and professionally, and create real change in the UK. www.dementiaresearcher.nihr.ac.uk/funding/chur...
- The 6th RNA Metabolism in Neurological Disease Conference: San Diego, March 29-31, 2026. This conference will bring together basic, clinical, and industry scientists to discuss the roles of perturbed RNA metabolism in neurological diseases. Abstract deadline: October 31, 2025: bit.ly/RNAMetabolism
- Date for your Diary! www.elsevier.com/en-gb/events...
- The MDS-PAS & EHDN Online Course takes place 15 & 22 August. This free course is in Spanish and aims to enhance understanding of HD through a multidisciplinary lens, focusing on current challenges and emerging perspectives. Click here for more info: education.movementdisorders.org/Detail/973/S...
- Please re-share - we're building our profile on BlueSky and would appreciate help in sharing updates and news in #huntingtonsdisease #research and #care
- Our 55th issue opens with a tribute to our much-loved and sadly missed colleague, Tim McLean. Highlights include a call to action from EHDN’s HEATED task force, clinical trial updates, and an interview with Daniel Claassen, Chief Executive Officer @ Huntington Study Group: ehdn.org/wp-content/u...
- The Jacques and Gloria Gossweiler Foundation invites applications for its Neurology Research Grant. The grant supports high-quality research on non-pharmacological treatments for symptoms of Parkinson’s disease & other movement disorders. For more information: www.jggf.ch/en/neurology...
- Listen to our latest podcast! www.youtube.com/watch?v=fEg4...
- Our 55th issue opens with a tribute to our much-loved and sadly missed colleague, Tim McLean. Highlights include a call to action from EHDN’s HEATED task force, clinical trial updates, and an interview with Daniel Claassen, Chief Executive Officer @ Huntington Study Group: ehdn.org/wp-content/u...
- MDS-PAS & EHDN Joint Online Course Series: Multidisciplinary Management of Huntington's Disease: 15 & 22 August, 2025. This free four-part online series covers comprehensive and multidisciplinary management of HD: education.movementdisorders.org/Detail/973/S...
- EAN's 11th Annual Congress takes place in Helsinki 21-24 June! Submit membership applications by 31 May for reduced delegate rates and take up this opportunity to connect, learn, and save! www.ean.org/congress2025
- Reposted by EHDN News[Not loaded yet]
- Exciting webinar by Jim Gusella coming up from the Hereditary Disease Foundation! Date for your diaries: Tuesday, May 20, 2025, 12-1pm ET. hdfoundation.org/2025-webinar...
- It is with very heavy hearts that we share the sad news that Tim McLean, our wonderful colleague and dear friend, passed away on 31 March 2025: ehdn.org/in-memoriam-...
- EHDN's Imaging Working Group have just published their second newsletter! Click here to read it: ehdn.org/wp-content/u...
- TODAY! We hope to see you there!
- Date for your diaries! EHDN Webinar 'Deep Brain Stimulation against Chorea in HD: Results and Reflections' by Prof Dr Jan Vesper: 31 March @16:00 CET, chaired by Prof Anne Rosser. All are very welcome to attend. More info: ehdn.org/deep-brain-s... Registration: us06web.zoom.us/webinar/regi...
- HD Gratitude Day 2025 A live-streaming event with the families of Venezuela and special guests will be hosted TODAY 16:00 GMT / 17:00 CET / 12:00 PM EST All welcome, please join here - us06web.zoom.us/j/8421059089...
- Date for your diaries! EHDN Webinar 'Deep Brain Stimulation against Chorea in HD: Results and Reflections' by Prof Dr Jan Vesper: 31 March @16:00 CET, chaired by Prof Anne Rosser. All are very welcome to attend. More info: ehdn.org/deep-brain-s... Registration: us06web.zoom.us/webinar/regi...
- Reposted by EHDN News[Not loaded yet]
- Our latest newsletter is available online: ehdn.org/wp-content/u... Highlights include an interview with EHDN chair Patrick Weydt and insights into the latest work of the Imaging Working Group. #HuntingtonsDisease #HDCommunity
- EHDN is recruiting! For our current vacancies, please click here: ehdn.org/about-ehdn/c...
- HD Gratitude Day 2025 takes place 23 March, 17:00 CET/16:00 GMT/ 12:00 PM EST. This 3rd annual meeting of thanks and celebration will be hosted by Jimmy Pollard with live presentations from Venezuela, USA & Europe. All are welcome to join the Zoom meeting here: us06web.zoom.us/j/8421059089...
- Reposted by EHDN News[Not loaded yet]
- See you there! HD Gratitude Day 2025... will share further details asap #HuntingtonsDisease #HDCommunity #RareDisease
- Reposted by EHDN News[Not loaded yet]
- Reposted by EHDN News[Not loaded yet]
- Reposted by EHDN News[Not loaded yet]
- We are deeply saddened by the loss of author and journalist Charlotte Raven. Charlotte was a passionate and powerful HD advocate and leaves behind an indelible legacy of courage and strength in the #HDcommunity.
- New research sheds important light on the mechanisms underpinning HD neuropathology: doi.org/10.1016/j.ce... and doi.org/10.1038/s415.... Together, these insights suggest a need for disease-altering therapeutics aiming to slow or stop somatic expansion. #huntingtonsdisease
- Reposted by EHDN News[Not loaded yet]
- A recent publication by Nopoulos and colleagues has stimulated important debate on the evidence for ß-blockers in potentially modulating HD pathophysiology. See the response by Koyak, Weydt & Aziz which points to the need for further experimental work: jamanetwork.com/journals/jam...
- Reposted by EHDN News[Not loaded yet]
- We are delighted to announce that the 2025 EHDN-MDS #Huntingtonsdisease fellowship programme is now open for applications! ehdn.org/hd-clinician...
- Current career opportunities: ehdn.org/about-ehdn/c...
- We have LOTS of exciting opportunities to share right now! The EHDN/MDS Fellowship programme will welcome applicants shortly. If you are interested in the latest developments, see page 11 of our latest newsletter: ehdn.org/newsletter-a...
- Reposted by EHDN News[Not loaded yet]
