Author: Maiken Arnesen

April Newsletter from EHA

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

Bright Lights Big City: HD-COPE descends upon New York City

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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Report from the 14th Huntington’s Disease Therapeutics Conference

This year in February the 14th Huntington’s Disease Therapeutics Conference took place in Palm Springs, USA. This is one of the largest annual meetings for professionals and researchers working on Huntington’s Disease. The conference was bigger and more exciting than ever before. By Alžbeta Mühlbäck Day 1 Brain Structure and Huntingtin Lowering Approaches We heard exciting…
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Apply for The Fellowship Programme in Huntington’s Disease!

The Fellowship Programme in Huntington’s Disease is now open for the 2019 round of applications. Deadline 15 March! Published at 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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EHDN News March

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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It’s Rare Disease Day!

Today is the twelfth international Rare Disease Day coordinated by EURORDIS. This year’s theme is ‘Bridging health and social care’. From “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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GENERATION HD1: Spain and UK sites announced today!

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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New Study Announced Today

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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HD on the Bike 2019

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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The first Italian youth association established

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.