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…
Voices from the community – the Dystonia Matters Podcast
In 2020, Dystonia UK launched the Dystonia Matters podcast as a powerful platform to give our community a voice. The podcast series allows us to share the stories of people living with dystonia, whether they’ve been diagnosed themselves, or care for someone with the condition. Our hope is that through telling the tales of our…
Meet Line from Norway
My story started the summer of 2009, with much discomfort in my eyes. January 2010 I had to stop working and was on sick leave due to extreme sensitivity to light and headaches. I was burned out. I was examined for Sjögren’s disease, infection and different illnesses of the eyes without any results. My eyes…
Cervical Dystonia Patient Journey
The cervical dystonia patient journey was published two years ago. Currently is is being translated into more languages. These are published on the ERN-RND (The European Reference Network for Rare Neurological Diseases) website. https://www.ern-rnd.eu/disease-knowledge-hub/dystonia/ We hope that this patient experience map will support patients who are newly diagnosed as well as other dystonia patients and…
