My name is Vidar Bjørkli, I am 64 years old and live in Finnsnes, Troms in Norway. I am married to Berit and have two grown up sons. Before my retirement two years ago I worked most of my life (nearly 40 years) as a journalist in the local newspaper Troms Folkeblad in Finnsnes. In…
On-line Dystonia Day 2024
We are delighted to announce our upcoming on-line Dystonia Day on 21 September on Zoom from 10.00 until 13.40. We will hear dystonia expert speakers and a patient testimony. There will also be the possibility to ask questions. Link to registration and the event will be available soon. Program 2024 final
Discovering a Missing Piece of the Dystonia Jigsaw: An International Collaboration on Understanding Brain Glucose Activity Patterns in Children and Young People with Dystonia
By Dr Jean-Pierre Lin, Evelina London Children’s Hospital, London, UK The award of the Dystonia Europe David Marsden Prize to Dr Stavros Tsagkaris represents a significant recognition of the importance of our work in investigating brain activity patterns in childhood and adolescent dystonias1, 2 representing a 20-year project to carefully unravel the mechanisms of dystonia…
Dr. Stavros Tsagkaris Receives the David Marsden Award 2024
Our congratulations to Dr. Stavros Tsagkaris, from the Evelina London Children’s Hospital in London, UK and the David Marsden Award 2024 for his paper: Metabolic Patterns in Brain 18F-fluorodeoxyglucose PET Relate to Aetiology in Paediatric Dystonia On Saturday 29 June Dr. Tsagkaris was presented with the award by Dystonia Europe Executive Director Monika Benson at…
Passion in Motion: Supporting Rare Disease Day in Romania
In an effort to bring light and hope into the lives of those affected by rare diseases, an innovative project has taken root in the heart of the Brazilian Jiu-Jitsu (BJJ) community in Romania. Under the motto “Rolling for Rare,” this project was initiated by the Children’s Joy Association for Dystonia together with the Iguana…
