18th of August the cycling race Géants Des Ardennes took place in Liège, Belgium. With the help of team leader Jeroen de Schepper, the European Huntington Association participated with their own team: HD on the Bike. Watch video below! Around 40 people had travelled to Liège from seven different countries. A group Read more…
Are you between 18 to 35, living in Europe and affected by a neurological disorder? Then you can participate in EFNA’s workshop! Register before September 21st. Register here. The European Federation of Neurological Associations (EFNA) is an umbrella group representing 20 pan-European neurology patient groups – including the European Huntington Association. There’s a Read more…
The European Medicines Agency has acknowledged the huntingtin lowering drug, RG6042 (previously known as IONIS-HTTRx), as a possible therapy that may significantly improve patients’ quality of life and granted Priority Medicine designation. Read more: GROUNDBREAKING RESULTS! In other words, with the “PRIME” (PRIority MEdicine) designation, the European Medicines Agency will assist Read more…
A newly published survey conducted by EFNA, shows that young Europeans with neurological conditions lives with a fear of isolation and stigma. This demonstrate the lack of knowledge in the general population. Sunday, July 22nd was World Brain Day. To celebrate the day the European Federation of Neurological Associations, EFNA, launched Read more…
HDYO is looking to hold a review meeting on the future direction of the Young Adult Working Group of EHDN at the conference in Vienna in Sept. The proposal is to change the direction of the Young Adult Working Group to be focused on Young People and Research. This will Read more…
Read about the Registery journey from the very beginning to the more recent successor study Enroll-HD. Cristina Ferreira gives you an insider’s view of her personal experiences with Regisery in an inspiring interview- definitely worth a read so don’t miss out on this interesting newsletter.
Wave is currently testing a new treatment known as ‘Precision medicine’. The drug only targets the disease-causing protein and leaves the healthy protein alone. Video interview below! In July 2017, Wave Life Sciences started their clinical trial known as ‘Precision HD’. The trial is a so-called Phase I clinical trial Read more…
Roche Pharmaceuticals is currently working on their Huntingtin Lowering drug, RG6042 (formerly known as IONIS-HTTRx). In the letter Patient Partnership Director, Mai-Lise Nguyen, write about the company and their philosophy on working with the HD patient community. On behalf of the Roche HD team Nguyen writes: – Since taking over Read more…
In September the European Huntington Association is arranging their Business Meeting in Vienna. This year the association wants to encourage as many family members as possible to participate. REGISTER HERE The EHA Business Meeting is taking place one day prior to the EHDN Plenary Meeting. The Business Meeting will happen Read more…
Over the last years, May have been Huntington Disease Awareness Month. Thanks to the Huntington Society of Canada buildings, monuments and statues has been lit up in blue and purple to raise awareness for Juvenile HD (in purple) and HD (in blue). Light up your home and share your photos Read more…