November 30, the “Huntington Challenge” started. Since then, the challenge has been spread across Europe. The aim is to raise money to help Huntington’s disease care homes and families. Video below! If you follow the European Huntington Association on facebook, you have probably noticed videos appearing marked with #HuntingtonChallenge. November 30, the European Huntington Association…
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If you have attended any of our conferences, you have probably noticed ‘HD on the Move’ in the programme. The sessions have been a regular part of our conferences since 2017. But what is the story behind and who is the man always leading the morning sessions? HD on the Move took place the very…
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October 4-6, the European Huntington Association conference was held in Bucharest. 220 professionals and family members were gathered in Romania to meet others and to learn more about Huntington’s disease. Over the weekend, more than 30 sessions and workshops took place at the Ramada Bucharest Convention Center. In addition, there were important meetings taking place…
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Thursday afternoon, October 3, the European HD-COPE members and the European Huntington Association board met in Bucharest, Romania. They talked about patient advocacy and latest Huntington news. The main objective of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE) is to shape research by being the voice of Huntington’s disease family members. Their aim is…
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The enrolment in the Phase III GENERATION HD1 study has been increased from 660 to 801 participants worldwide.This change does not impact participants already enrolled in the study, but it allows for additional patients to enrol in the three existing study groups. By enrolling more participants, Roche and Genentech will receive more data and increase…
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There are currently many pharmaceutical companies working on huntingtin lowering drugs. A new study from Sangamo Therapeutics and CHDI foundation might show a promising new huntingtin lowering tool. There is a lot of Huntington’s disease research going on at the moment. Among other things, PTC Therapeutics is working on a pill – a small molecule…
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In order to ensure good care for Huntington patients and their families, the HEALTHE-RND project aims at developing an e-health platform. The platform will ensure access to help and information – regardless of where people live. Written by Alzbeta Mühlbäck, MD What’s it all about? Huntington’s disease (HD) require intensive cooperation between different medical disciplines and…
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It was summer 2017 when I stumbled on the webpage of the European Huntington Association. At that time I was taking my first steps in the Huntington world. Having tested positive for the gene a few years earlier, I was now longing to be part of a community. Written by Rob Haselberg, first published in…
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The EHDN Newsletter is here! Get updated on ongoing trials and Enroll-HD, read about Rob’s first meeting with the Huntington community and the situation for Huntington families in Venezuela. CONTENT Page 2 The Huntington’s disease minipig, Adela, is 10 Page 3 Giving families a place, a face and a voice Page 4 Update: Clinical trials…
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Do you have a good idea? Have you conducted interesting research? Or learned anything meaningful through your work? We want to know about it! Bring your poster to EHA Conference 2019! How? 1) Write a short description of your poster and send it to info@eurohuntington.org.2) Print your poster and bring it to our conference in…
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