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…
We will participate with our own team ‘HD on the Bike‘ at the bicycle race ŠKODA Velotour 1st of May 2019. We hope you will join us! Last year we managed to gather 40 bikers in Liège, Belgium. This year we want to be even more! We guarantee that it Read more…
December 1st 2018, the first Huntington association for young people in Italy was presented. Their goal is to raise awareness and enhance collaboration across borders.
Read about some of the things that happens in the European Huntington world. Learn about ongoing and upcoming trials, the first Huntington’s Disease (HD) week in Romania and our Business Meeting in Vienna. Find the Newsletter here: The Voice of HD Remember to subscribe to get updated on the latest Read more…
The 13th of September, European Huntington Association’s Business Meeting took place at the Austria Center Vienna. Around 70 people participated. Among them were many new faces.
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…