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…

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…

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…

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…

Both global and national patient leaders gathered for 2 days at the Marriott Opera Ambassador Hotel in Paris. The objective of the meeting was to collaborate with the Ipsen team members on shaping the Ipsen Global Patient-Driven Strategy and Roadmap, the creation of a Patient Charter and ultimately to foster ongoing collaboration between Ipsen and…