From left: Monika Benson, Executive Director, Dystonia Europe and project leader and platform creator is physiotherapist Johanna Blom at Malmö University Hospital in Malmö, Sweden. On June 28th Physiotherapist Johanna Blom and Monika Benson presented the Dystonia Physio Exercise Hub at the European Conference for Rare Diseases. The goal of the ECRD 2022 is…
Dystonia Days and GA 2022
Our last face to face meeting with members was in June 2019 so I was really looking forward to meeting my friends on the Dystonia Europe Board and our members who were able to join us for the weekend. I left my home at 03:30 for my 06:00 flight to Copenhagen via Amsterdam and arrived…
Dystonia Awareness Month 2022. I AM… IT TOOK…
Come join us in this year’s dystonia awareness month with focus on #dystoniajourney. In our recent work with the dystonia patient journey and also the dystonia survey of Prof Relja in 2019 we have seen that the time of diagnosis can differ from a few months to several years. Very often it depends on where…
Under Production: Season 2 of Dystonia Europe Podcast – The Positive Twist
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…
