The first season of our podcast: The Positive Twist was launched during the pandemic, autumn 2020. We have received much positive feedback and until now the podcast has had over 2300 downloads. We have therefore decided to work on a second season. Interviews and recordings are now taking place for 6 new episodes. First episode…
“Once upon a time” a Short Film on Dystonia and DBS Treatment
My name is Pierre Colback. I’m 24 years old and I was a student in Visual Effects at the Haute Ecole Albert Jacquard based in Namur, Belgium. Being affected by a form of primary dystonia since I was 10 years old officially but unofficially longer I think. For me, it seemed obvious to study this…
Dystonia and Relationships: Preliminary Survey Results
In addition to the well-known motor features of people with dystonia, also many have been reporting non-motor symptoms. Functional impairment, pain, social embarrassment, anxiety, social phobia, and stigmatisation seem particularly common and have a clear impact on the quality of life. This might considerably influence self-confidence and could, therefore, have an impact on relationship and…
Dystonia Europe Annual General Assembly 2022
Dystonia Europe held its 29th Annual General Assembly on 20 May at Hotel Scandic Copenhagen in Copenhagen, Denmark. It was a wonderful reunion for many of the DE members who had not met face-to-face since London 2019. A total of 27 participants from 13 member associations participated. Dystonia Europe President Adam Kalinowski welcomed all and…
EPF AGM 2022
On the 23rd April, EPF held their Annual General Meeting online. Dystonia Europe is a member of EPF (European Patient Forum). An opening speech was given by Marco Greco, EPF President and Anca Toma, EPF Executive Director. EPF is the leading voice of patient organisations in Europe and promotes patient advocacy. They bring together people,…
