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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Do you have a camera? Or maybe a friend that has one? Take part in our photo exhibition during our conference! We want people to see the many faces of Huntington’s disease! Everyone that’s affected by Huntington’s disease can participate: If you are a family member of someone with the disease, if you are affected…
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Have you heard about our conference but not yet decided if you want to go? Cristina Ferreira went all by her self from Portugal to Bulgaria to join us in 2017. Read her story: I come from a Portuguese Huntington’s disease family. My mother was diagnosed with Huntington’s in 2012. At this point she was already…
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Over the last years, May has been Huntington Disease Awareness Month. Starting off at the Huntington’s Society of Canada, Awareness Month and the #LightItUp4HD campaign has grown into a global movement. During May, buildings, monuments and statues worldwide will be lit up in blue and purple. Blue to raise awareness of Huntington’s disease, purple of Juvenile…
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The video from CHDI’s therapeutics conference is here! This year, the conference was bigger and more exciting than ever. Learn more about the latest research and treatment. Watch the video below! The conference is the biggest annual gathering of Huntington’s disease researchers. At the 14th Therapeutics Conference, 360 researchers participated. During the gathering in Palm…
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