Our congratulations to Dr. Michael Zech, from the Institute of Human Genetics, Technical University of Munich and the Institute of Neurogenomics, Helmholtz Zentrum München, in Munich, Germany and the David Marsden Award 2023 for his paper: Biallelic AOPEP Loss-of-Function Variants Cause Progressive Dystonia with Prominent Limb Involvement. Last July Dr. Zech was presented with the…
Unlocking Minds and Opening Doors
As a member of the committee (board) for Action for Dystonia, Diagnosis, Education and Research (ADDER), I was recently asked by our local Neurological Alliance (Neuro Key) to help produce a leaflet as part of their ‘Open Door’ campaign. The campaign has produced several leaflets each one about a different neurological condition with the aim…
Dystonia Infographics
One of the main activities for Dystonia Europe is to spread information and raise awareness of Dystonia. Therefore we have decided to develop a series of infographics describing dystonia treatments and various types of dystonias in an easily accessible way. We hope you like them and we appreciate your help with sharing these.
The Positive Twist Podcast
Season two of our successful podcast The Positive Twist will be launched end of June. We have 5 new episodes to be published at the end of each month until October. We have met with both dystonia patients, board members of Dystonia Europe and medical experts in this season. You will find the podcast on…
EPF Annual General Assembly and 20th Anniversary
EPF 20th Anniversary Marco Greco, President of European Patient Forum (EPF) opened the meeting 28th April 10.30 am. in Brussels. Dystonia Europe is a full member of EPF and was present at the meeting. Looking back the organisation has grown tremendously during the 20 years since it was founded in 2003. Reflections were made on…
