The Finnish Dystonia Association celebrated its 25th anniversary in September in Pori, Finland. As a nationwide organisation, we chose a new city as a venue. Approximately 50 members gathered to meet each other, to receive and provide peer support and to listen to interesting presentations by neurologists, physiotherapists, and rehabilitation psychologists. A new president was…
EPF holds Webinars on Label2Enable
EPF (European Patient Organisation) held 2 webinars this autumn on a project were EU works on a quality label for health and wellness apps. This project is called Label2Enable made possible through funding from Horizon Europe. What will the project do? Label2Enable aims to promote the ISO/TS 82304-2 health app assessment framework and label to support the…
Spastic Dyphonia Days in Norway
Jens Øyvind Loven, Jannicke Devold and Jorid Løvbakk are specialists in spastic dysphonia also called laryngeal dystonia. On the 6th and 7th September 2023 they were happy to participate in a meeting held by the Norwegian Dystonia Association at Hotel Olavsgaard, Skjetten in Norway about the condition and the treatment opportunities. Altogether there were 15…
30th Anniversary Deutsche Dystonie Gesellschaft
Saturday 26 August DDG Dystonia Dystonie Gesellschaft had a member meeting in Fulda at hotel Esperanto. This also marked 30 years of the organisation and in the evening there was a Anniversary Dinner. Dystonia Europe was invited and President Edwige Ponssel and Operations Manager Merete Avery attended. The meeting started 9.15 in the morning with…
Cervical Dystonia Patient Journey Performance at EAN Congress
At the beginning of July the EAN (European Academy of Neurology) 2023 Congress was held in Budapest, Hungary. DE Executive Director Monika Benson attended the event. As reported earlier Dystonia Europe has together with Ipsen and ERN-RND (European Reference Network for Rare Neurological Diseases) developed the Cervical Dystonia Patient Journey which was published in 2022….
