During Dystonia Days the Finnish association had an annual meeting where Jukka Sillanpää was re-elected as a president for the period 2022-2023. Annually half of the board (and vice members) are to be elected. In the picture (from the left) Pekka Karimerto, Taina Lehtinen, Jukka Sillanpää, Sari Kuja-Kyyny, Paula Happonen, Leea Sihvo-Rajala and Martti…
Meet Paula Happonen, Board Member of the Finnish Dystonia Association
What is your name? My name is Paula Happonen. What are the benefits of working within a patient organisation? By volunteering I am able to contribute to well-being of other people who live with dystonia. I am able to provide and receive support. I have made…
Second Italian National Dystonia Day
On Sept.25th A.R.D. organized the Second Italian National Dystonia Day; it was an online event, shared by our social media, as it had been in 2020. Last year Prof. Albanese had launched an ambitious project concerning musicians: a survey in Italian Music Academies, Schools and Conservatories in order to know whether students are informed about…
Members meeting face to face in Norway
Members of a local group in The Norwegian Dystonia Association (NDF) gathered for a 2 day meeting on August 24th, in the beautiful Rømskog SPA outside Oslo, Norway. This was the first face to face meeting since the pandemic started and the members were very pleased to meet again. The program: Information of what NDF…
MyDystonia App Ambassador Meeting
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…
