On Thursday, 30 October, 2025, Dystonia Europe held a webinar with three dystonia experts, and invited the audience to share their questions with them. If you missed the webinar, no problem! You can watch the recording now on our YouTube channel. Thanks to all of you who joined us on the evening and shared your…
Meet Antonio Santilli – My Dystonia Story
I know dystonia well. Not from hearsay, nor from medical readings: I know it on my skin, in my muscles, in my nerves, in my voice, in my daily thoughts. Oromandibular dystonia is my traveling companion—often uncomfortable, always present. But it has never managed, and never will manage, to define who I am. My…
ERN-RND Annual Meeting in Tutzing – Working Together for Better Care
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…
