MyDystonia is an electronic diary created for people with dystonia. This diary enables patients to monitor their symptoms and how those symptoms affect daily life. Patients can share insights with their doctor to discuss how to optimize their treatment approach. After years of experience and feedback from users, app ambassadors and advisors, in May 2021 we launched a new, improved version of the application. The new MyDystonia is very different from the previous one.
The Ambassador Programme was launched in 2016 to support the roll-out of the MyDystonia App in Europe. Ambassadors are also responsible for supporting application users at the national level in their native language. Now we have representatives for 12 countries on board: Belgium, Denmark, Finland, France, Germany, Ireland, Italy, Norway, Poland, Romania, Sweden and UK. The ambassador role is voluntary. If you think you can support the program and want to become an MyDystonia Ambassador for a European country not listed above please contact us.
Ambassadors meet once a year. This year the meeting took place on June 26, 2021. It was the sixth meeting and the first online since the launch of the MyDystonia. 12 participants from 10 countries including Dystonia Europe representatives met to hear an update on the new MyDystonia version, share feedback and plan next steps. We were very pleased to be joined by new ambassadors: Ulf Borg from Sweden, Thijs R.C. Vandewoude from Belgium and Martina Kühn from Germany.
After the welcome to the meeting by the DE President Adam Kalinowski and introduction of participants, DE IT advisor Eelco Uytterhoeven gave a presentation and took ambassadors through the new version of the app showing all its added functionality. After the presentation, the meeting participants had the opportunity to ask questions and contribute their ideas. The participants also talked about future plans such as translating MyDystonia into different languages, promoting and engaging specialists treating
dystonia patients to use the application reports to improve the treatment.
The new version is available in English only, but new languages will be added at the end of this year or the first half of 2022. The ambassadors agreed to help with the translation. The whole meeting lasted two hours and was very productive.
Thank you to all ambassadors for their dedication and great support in working on the application. The next ambassador meeting is scheduled for 22nd May. We hope this meeting will be held face to face in Copenhagen, alongside Dystonia Day 2022.
You can find out more about the MyDystonia on our website: https://dystonia-europe.org/projects-1/projects/mydystonia/
From top left:
Gill Ainsley – app ambassador for UK and DE rep.
Adam Kalinowski – app ambassador for Poland and Ireland, DE rep.
Ulf Borg – app ambassador for Sweden
Sissel Buskerud – app ambassador for Norway and DE rep.
Thijs R.C. Vandewoude – app ambassador for Belgium
Ulrike Halsch – app ambassador for Germany
Tiina Pellinen – app ambassador for Finland
Edwige Ponseel – app ambassador for France and DE rep.
Raquel Vacas – app ambassador for Italy
Martina Kühn – app ambassador for Germany
Eelco Uytterhoeven – DE IT advisor
Merete Avery – DE rep.
Adam Kalinowski
MyDystonia Coordinator
Dystonia Europe President
