29 February 2020 will be the thirteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. Find events near you! | Get involved! Rare Disease Day takes place on the last day of February each year. The main objective of Rare…
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Just before the new year, Wave announced that the drug in the PRECISION-HD2 trial had successfully lowered the concentration of mutant huntingtin in the spinal fluid. By Dr Jeff Carroll | Edited by Dr Ed WildPublished January 03, 2020 at www.HDBuzz.net DNA-based drugs called antisense oligonucleotides, or ASOs, are now in multiple clinical trials in Huntington’s disease, aiming to lower production…
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This Christmas, we launched the first HD Trial Finder in Europe. HD Trial Finder is a platform developed to make it easier for you to find out more about ongoing Huntington’s disease (HD) trials and studies in Europe. Right now, Huntington’s disease trials and studies are taking place all across Europe: GENERATION HD1, ENROLL-HD, PRECISION-HD1,…
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Today, December 30, Wave announced the first preliminary results from the their study PRECISION-HD2 . So far the results are very exciting and promising. It’s very encouraging to enter a new year with such exciting news from Wave. I look forward with optimism to the next steps in these trials. Astri Arnesen, President EHA In PRECISION-HD2…
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UniQure announces key details of its planned trial to assess the safety and ability of AMT-130 gene therapy to lower the problematic huntingtin protein using a ‘single-shot’ virus delivery system. Article byDr Anna Pfalzer published at HDBuzz.net The European Huntington Association met uniQure in September to talk about the gene therapy trial. Go to video interview…
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A few weeks ago The Huntington Disease Center in Lund, Sweden, welcomed researchers, clinicians and representatives from patient organizations in the Nordic countries to the second Nordic Huntington Disease Research Meeting in Lund. First published in Faculty of Medicine by Agata Garpenlind Among the prominent visitors were Patrick Weydt, representative of the European Huntington Disease Network…
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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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