On several occasions we have asked you, our followers, what you want to see and hear from Dystonia Europe. And the list is long. Many of you wish to hear from other dystonia patients and how they manage their dystonia. You also want to have information on treatments and research. We have therefore decided to…
Publication on Dystonia: Dystonia Management across Europe within ERN-RND: Current State and Future Challenges
Liesanne M. Centen,#1,2 David Pinter,#3 Martje E. van Egmond,1,2 Holm Graessner,4 Norbert Kovacs,3 Anne Koy,5Belen Perez-Dueñas,6 Carola Reinhard,4 Marina A. J. Tijssen,1,2 and Sylvia Boesch7 Background Since the first European-wide evaluation of dystonia management in 2016, several efforts have been made to improve dystonia-care. One of these was the development of the Dystonia Disease Group as a part of the European Reference Network for…
A randomised double-blind controlled study of Deep Brain Stimulation for dystonia in STN or GPi – A long term follow-up after up to 15 years A summary
Deep Brain Stimulation (DBS) is a neurosurgical treatment, where electrodes implanted in deep nuclei in the brain, via stimulation, normalises output in motor networks affected by movement disorders. DBS in dystonia has proven a safe and effective treatment, but variable results have been presented depending on the types of dystonia and precise targeting in the…
Presentation of the DMA at the EAN 2022 Basal Ganglia Club Session
European Academy of Neurology is a non-profit, independent organisation representing more than 45,000 members, as well as 47 European national societies. The 8th Congress of the EAN took place in Vienna in June this year. EAN Congress is one of the biggest neurological events in Europe. This year 380 lecturers and 5300 onsite participants took…
Diet and Dystonia Survey
‘Diet and Dystonia’ is now open on our platform. The main goal of this research is to examine how diet affects dystonia, and if so how dystonia specialists could address these problems. The survey is completely anonymous, which means that no personal information will be collected. We will be very grateful if you decide to…