Category: Research

EHA19: An Amazing Conference

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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Update on GENERATION HD1 study

The enrolment in the Phase III GENERATION HD1 study has been increased from 660 to 801 participants worldwide.This change does not impact participants already enrolled in the study, but it allows for additional patients to enrol in the three existing study groups. By enrolling more participants, Roche and Genentech will receive more data and increase…
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New huntingtin lowering treatment?

There are currently many pharmaceutical companies working on huntingtin lowering drugs. A new study from Sangamo Therapeutics and CHDI foundation might show a promising new huntingtin lowering tool.  There is a lot of Huntington’s disease research going on at the moment. Among other things, PTC Therapeutics is working on a pill – a small molecule…
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New project: e-health for Huntington’s patients and families

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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Latest Huntington News!

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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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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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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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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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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