The Fellowship Programme in Huntington’s Disease is now open for the 2019 round of applications. Deadline 15 March! Published at ehdn.org EHDN in collaboration with MDS-ES (The International Parkinson and Movement Disorder Society’s European Section) will be awarding SIX grants in 2019 for applicants to visit an EHDN or MDS-ES centre with Huntington’s Disease expertise in Europe. The…
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The European Huntington’s Disease Network (EHDN) has launched their March Newsletter. Find it here! In the March edition you can learn more about the Fellowship exchange programme and how you can apply. Read about The Unwanted Inheritance – a documentary about a Huntington nursing home in Belgium – and get updated on clinical trials, Enroll-HD and research.…
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Today is the twelfth international Rare Disease Day coordinated by EURORDIS. This year’s theme is ‘Bridging health and social care’. From rarediseaseday.org: “According to the first ever Europe-wide survey on juggling care and daily life with a rare disease carried out by Rare Barometer, 8 in 10 patients have difficulties completing basic daily tasks. Communication…
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Today, Roche announced their enrollment of European participants from Spain and UK in GENERATION HD1. Over the next two years, safety and efficacy of the drug RG6042 will be studied. You can find the Spain and United Kingdom sites below. One month ago, Roche announced that the first patient entered the GENERATION HD1 study.…
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Today Roche announced that the first patient has entered the GENERATION HD1 study. A trial that will investigate the efficacy and safety of the huntingtin lowering drug RG6042 – formerly known as IONIS-HTTRx. Over the last couple of years, the safety of the drug and short term effects, have been measured in 46 participants. Now…
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We will participate with our own team ‘HD on the Bike‘ at the bicycle race ŠKODA Velotour 1st of May 2019. We hope you will join us! Last year we managed to gather 40 bikers in Liège, Belgium. This year we want to be even more! We guarantee that it will be a lot of…
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December 1st 2018, the first Huntington association for young people in Italy was presented. Their goal is to raise awareness and enhance collaboration across borders.
Read about some of the things that happens in the European Huntington world. Learn about ongoing and upcoming trials, the first Huntington’s Disease (HD) week in Romania and our Business Meeting in Vienna. Find the Newsletter here: The Voice of HD Remember to subscribe to get updated on the latest Huntington news!
The 13th of September, European Huntington Association’s Business Meeting took place at the Austria Center Vienna. Around 70 people participated. Among them were many new faces.
Roche Natural History study will soon start in UK and Germany. Over a period of 15 months, participants will be observed to measure the progression of Huntington's Disease. Following the observation, all participants will be offered the Huntingtin Lowering drug RG6042. Three clinics in Germany and 4 in the UK will soon start recruiting participants for the…
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