My name is Sandra, and I am from an island called Fyn in Denmark. I do not have dystonia myself, but my mom does. She has generalised dystonia and uses a wheelchair. My story will not be about having dystonia. My dystonia story will be about my experience growing up with a parent with dystonia….
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…
AMADYS, France: Workshop on Focal Dystonia: Treatment and Rehabilitation
Since 2018, we have been organising training sessions on the rehabilitation of cervical dystonia and function (writer’s cramp) given by Dr. Jean-Pierre Bleton, in the regions, in person, by communicating with local medical professionals and their federations or health care institutions. We wanted to organise a session for the Paris area and Dr. Bleton had…
David Marsden Award Winner Dr Susanne Knorr
At the end of Dystonia Europe’s annual conference Dystonia Days, President Adam Kalinowski presented the David Marsden Award to Dr Susanne Knorr from the University Hospital in Würzburg Germany, coincidentally the same place that last year’s winner was from. Susanne then went on to present her research ‘The evolution of dystonia-like movements in TOR1A rats after…
