Dystonia Europe is an umbrella organisation for national dystonia associations in Europe. From 2012, Dystonia Europe has become the platform at the European level for all dystonia stakeholders, to benefit patients and their families by promoting more interest in dystonia and by working together with patient advocacy groups, medical and healthcare specialists, researchers, pharmaceutical and medical device companies, foundations and individuals working at the pan-European level.
The aims of Dystonia Europe are to provide an international platform at the European level that will:
- provide the possibilities for members to add value to their own activities and services, and to improve the lives of people living with dystonia.
- stimulate research for more effective treatment and, ultimately, to find a cure.
Dystonia is a neurological movement disorder that causes continuous muscle contractions, leading to twisting and repetitive movements or abnormal postures. Dystonia can affect just one part of the body or be generalized throughout multiple muscle groups. Dystonia is chronic but the vast majority of dystonias do not affect other functions of the brain.
Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.
Dystonia Europe Projects
My Dystonia APP 2.0
An electronic diary that can be used for better communication between patient and physician and more.
The Positive Twist is a podcast about the third most common movement disorder, dystonia. In every episode we meet patients, caregivers and experts, sharing facts, and their stories related to dystonia, each ending with a positive twist! So far we have 7 episodes that you can find here: dystoniaeurope.buzzsprout.com
The David Marsden Award
Dystonia Europe established the David Marsden Award in 2003, to acknowledge Prof Marsden’s work on the dystonias, and to honour the immense part he played in improving the lives of so many people who live with the condition. The award of €10,000 was previously given out every other year and sponsored by IPSEN. From 2021 the award will be given annually.
Dystonia Survey Platform
Dystonia Europe launched its own survey platform to support researchers in moving forward research that could lead to future treatments and cures for dystonia.
Dystonia Europe Newsletter
Dystonia Europe share a newsletter three times a year: in spring, summer and winter. You can access past issues below: