BACKGROUND
Dystonia Europe
Dystonia Europe was founded in 1993. It is the umbrella organisation for 22 national dystonia patient associations from 18 European countries.
First Application
MyDystonia is an application created by Dystonia Europe for people with dystonia to monitor their health condition and daily routines. This electronic diary documents symptoms and disease impact according to medication. This tool can be used by patients for their own records and to improve communication with the physician during medical appointments to improve treatment outcomes.
Positive Feedback
Dystonia Europe has talked to many patients, national patient organisations, physicians and researchers about the potential of the next generation of MyDystonia. Although MyDystonia has seen many positive reactions, there has been many ideas on how to improve it and also adapt it to other brain diseases.
Receiving a Grant
Dystonia Europe was one of the first recipients of the BMP (Brain, Mind and Pain) grant from Pain Alliance Europe and Grünenthal for our innovative project MyBrainNet – the digital diary platform for neurological brain diseases. With the grant the development of the diary platform and the updated version of MyDystonia2.0 could start.
Platform Launch
The platform and its first diary (MyDystonia2.0) was launched in September.