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 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…
Webinar Drugs and Dystonia
MD PhD. Inger Marie Skogseid Senior Consultant Neurologist and Researcher Oslo University Hospital Photo by The Information Department at University Hospital On February 22nd we hosted our 10th webinar in our webinar series. There were nearly 60 participants who followed the webinar on zoom, and sent live on Facebook. Inger Marie gave us an…
Winter Think Tank 2022
Dystonia Europe Winter Think Tank 2022 was held on Zoom last February. DE had a Board Meeting the day before. Members of the Think Tank are our Platinum sponsors: Boston Scientific, Ipsen, Medtronic and Merz. President Adam Kalinowski welcomed all to the Think Tank meeting and Executive Director Monika Benson gave an update on the…
