Roche Natural History study will soon start in UK and Germany. Over a period of 15 months, participants will be observed to measure the progression of Huntington's Disease. Following the observation, all participants will be offered the Huntingtin Lowering drug RG6042. Three clinics in Germany and 4 in the UK will soon Read more…
For Music Therapists, Sunniva Ulstein Kayser, music is an important channel for communication. Read more about how music therapy can help in establishing and maintaining interaction with Huntington’s patients. By using Sound Beam – a music installation that transforms movement into music – Sunniva and patients at the Huntington department Read more…
Huntington Onlus, the Italian network of Huntington Disease, was given the annual volunteer award by Lombardy Region Authorities. With more than ten million inhabitants, Lombardy is the biggest Italian region. It’s a beautiful and very dynamic area devoted to economy, agriculture and tourism. Here, the advocacy work for Huntington’s disease Read more…
This summer I got an unexpected e-mail. Bea de Schepper had collected medical equipment, stored it in her house in Belgium and wanted to donate it to a Huntington’s Disease association that could make good use of it. The equipment consisted of hospital beds, wheelchairs, chairs, toilet chairs, tables, walkers, Read more…
Huntington’s disease can be a complex disease to live with and it can be even more complicated to live as a gene carrier. In those cases, it can be of great help to talk to others in the same situation. That’s exactly what Alice Rivières and her friend thought a Read more…
New findings indicate that Juvenile Huntington's should be separated into two distinct categories, which in turn may be treated differently. Children with a long mutation length shows a faster rate of disease progression compared to adults and children with a shorter length. Today The Lancet Neurology, a part of The Read more…
From 13thto 16thof September, to important meetings took place in Vienna: the EHA Business Meeting and the EHDN Plenary Meeting. During the weekend EHA’s board was re-elected and over 1000 participants got updated on the latest Huntington research. Pictures below! The European Huntington Association’s Business Meeting took place at the Read more…
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…