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…
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…
Dystonia Day 21 May 2022, Information and Program
Welcome to the Dystonia Days 2022 at the Scandic Copenhagen Hotel in Copenhagen in Denmark 20-21 May. For information and registration: https://dystonia-europe.org/projects-1/events/dystonia-days-2022-copenhagen/ We are looking forward to finally meet face-to-face and to listen and learn from dystonia experts and to connect with old and new friends from across Europe.
Dystonia Research Update
We are delighted to present this new page in our newsletter. Here we will share the most recent publications in the field of dystonia research together with a summary in lay language. Ledda C, Artusi CA, Tribolo A et al. Time to onset and duration of botulinum toxin efficacy in movement disorders. J Neurol. 2022…
Meet Jan from England: My Journey with Dystonia
I first noticed a problem with my neck, seventeen years ago at the age of 43. The main difficulty was trying to turn my neck especially when crossing a road. The situation worsened very quickly in that my neck was turning to the right. At the time I was working as a financial adviser…
