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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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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The exciting trials Precision HD 1 and 2, continue to enroll participants. Wave Life Sciences expect to share the first results by the end of 2019. In the Huntingtin lowering trials, Wave Life Sciences only target the mutant Huntingtin protein. This is a completely unique approach. Learn more: New Treatment? The initial timelines have been delayed by…
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Read all about the HD therapeutic conference in Palm Springs, lates news from Roche, the upcoming EHA conference in Bucharest and more. Find the newsletter here: The voice of HD
The HD-COPE committee held its second annual meeting in the Big Apple, February 21-24, 2019. This year the committee welcomed members from Africa, Australia, China and South America. Now making it an international power house in the HD community. Written by Dina de Sousa, member of HD-COPE HD-COPE, the Huntington’s Disease Coalition for Patient Engagement, was…
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