We are excited to share that Dystonia Europe is hosting an upcoming webinar focusing on “Children, Dystonia & DBS”. This event, taking place on Wednesday, January 29, frmo 18.00-19.30hrs CET, promises to shed light on important aspects surrounding childhood dystonia and the potential benefits of Deep Brain Stimulation (DBS) procedures. Childhood dystonia can present unique…
Online Dystonia Day Conference September 2024
The Dystonia Europe Board decided that this year our annual conference day would be held online using zoom. We used this method during the covid restrictions and not only did it work really well it was also a great deal cheaper than a face to face meeting. We all still prefer face to face meetings…
Workshop about Physiotherapy and Cervical Dystonia in Newcastle upon Tyne
A one-day course about physiotherapy and cervical dystonia for physiotherapists was organised on Friday at the Silverlink Hotel outside of Newcastle upon Tyne in the UK. 22 physiotherapists, most of them from the local area but also from all over the UK, had come for the course. Gill Ainsley, Secretary and Vice President of Dystonia…
Meet Elizabeth, Ireland
What is your name? Elizabeth Cunningham What are the benefits of working within a patient organization? I have been a communications professional with patient organisations for ten years and find it extremely rewarding. I came to this career because I live with a chronic neurological condition (migraine). From an early age, I knew that…
Project Cervical Dystonia Patient Journey Update
The work on the project Cervical Dystonia Patient Journey continues. It all started four years ago when we developed a patient journey/patient experience map for people living with cervical dystonia in Europe. It is being translated into other languages and these are all available on the ERN-RND website. https://www.ern-rnd.eu/disease-knowledge-hub/dystonia/ There you find the cervical dystonia…
