Category: News

May is Huntington’s disease awareness month!

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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Video – Latest research news!

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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Precision HD trial update

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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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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Roche changes plans – Less lumbar punctures needed in HD trial

Roche announced today, March 21st 2019, that the procedures in the huntingtin lowering trial Generation HD will be changed. Instead of monthly lumbar punctures the participants will only be injected every second month. This means less burden on the participants and on the clinical sites. The reason for this extraordinary descision is analyzes of data…
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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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