On the last Sunday of October, participants of the European Reference Network for Rare Neurological Diseases (ERN-RND) gathered in Tutzing for the network’s 9th Annual Meeting. Prof. Holm Graessner, network coordinator, welcomed everyone and opened the meeting with an overview of the network’s activities. The ERN-RND team then shared updates on current projects. Carola presented focused initiatives…
Dystonia Europe Board Visit Health House in Leuven for DBS Select Tour
When the Dystonia Europe board met in Leuven in October we were lucky enough to be invited to a tour of the DBS (Deep Brain Stimulation) Select facility which is currently on the outskirts of Leuven. I wasn’t sure what to expect but as I am currently considering DBS for myself I was keen to…
Mats Nyberg – Chairman of the Swedish Dystonia Association
My name is Mats Nyberg, I am 56 years old and I live in a terraced house just outside Stockholm together with my wife. I have a background as a researcher in quantum chemistry, but since 2003 I have been teaching physics and math in high school. In 2010 I started noticing a twist of…
Ask the Expert Webinar (Oct 30)
If you have questions about dystonia, now is your chance to ask the experts! On Wednesday, 30 October, 2025, from 18.00 – 19.30hrs CET, Dystonia Europe will hold a webinar with three dystonia experts, and the audience will be invited to share their questions with them. Our expert panelists are: Prof. Alfonso Fasano – Prof…
Dr Anna Sadnicka of the Computational Movement Disorders Lab, University College London
As both a doctor and a researcher working with people who have movement disorders, I see every day how profoundly dystonia can affect someone’s life. Dystonia is a complex and heterogeneous group of conditions, and too often, that complexity goes unrecognised. Even when research is underway, it doesn’t always align closely enough with the real-world…
