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 Read more…
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
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 Read more…
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 Read more…
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 Read more…
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 Read more…
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 Read more…
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 Read more…
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 Read more…
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 Read more…