Last September we celebrated another fantastic dystonia awareness month. Focus this year was the Patient Journey*. We had created a series of carousel posts describing a fictional cervical dystonia patient. Throughout the month we followed Lilly and her journey with dystonia from the first symptoms, through the various stages of diagnosis, treatment and living with…
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…
Dystonia Awareness Video Project
As we informed you in an earlier our newsletter, we are working on a very exciting project – a series of dystonia awareness videos. The aim of these videos is to show the symptoms of different types of dystonia for better understanding by people who have never heard of this disorder. The videos will be…
EFNA Board Meeting in Brussels
The following day there was an EFNA board meeting. Orla Galvin, EFNA Executive Director, presented the preliminary results of the survey on assessing diagnosis and care pathways of people living with neurological disorders in Europe. Over 1000 participants from 23 different countries participated in the survey. Some of the results show that: 32% of people…
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…
