The changes in the brain that lead to dystonic movements have been the subject of extensive investigation, particularly for the genetic forms. DYT1 dystonia is the commonest genetic cause of childhood onset dystonia and various studies in cell, animal and human studies suggest it is due to a problem with circuits controlling movement, focused on…
Dystonia Europe Digital Resources
In 2020 Dystonia Europe launched several new digital activities. The pandemic made it impossible to travel to any meetings for over 2 years. Therefore we had to look at new ways of working. All board meetings were held on Zoom and we had to change the way we work and move all our activities on-line….
Children’s Joy Rare Disease Day
Rare Diseases Day was observed in Timisoara, Romania during the art exhibition’s 4th edition “Look at me from the inside” which is a continuation of the exhibition’s 3rd edition “Captive in my body”. This art exhibition reflects rare diseases including some forms of dystonia. The purpose of this exhibition is to draw attention to the…
Press Release Cervical Dystonia Patient Journey
Find here the Press Release regarding the first ever dystonia patient journey map revealing multiple gaps to optimal care, which will be presented this weekend at our international dystonia patient meeting, Dystonia Days, in Copenhagen, Denmark. Additional information: Cervical Dystonia Media Factsheet
First ever Patient Experience Map in Cervical Dystonia Reveals Multiple Barriers
The first cervical dystonia patient experience map was published in February in the peer-reviewed publication, the Orphanet Journal of Rare Disease. The development of the new map was a collaboration between Dystonia Europe and Ipsen and was underpinned by research of people living with cervical dystonia in the UK, Italy and France to shine…
