What is your name? My Name is Julia Kühne. I live in northern Germany, in a city called Rostock. What are the benefits of working within a patient organisation? Working in a patient organization is a very special experience to me, as it is the first time since I was diagnosed with Dystonia, I don’t…
4th National Dystonia Day in Italy
On Sept. 30th Associazione per la Ricerca sulla Distonia (A.R.D.) organised the 4th National Dystonia Day. In order to increase visibility and attention towards dystonia, in 2020 we decided to create a National Day to be held on the last Saturday of September, preceded by articles or interviews published via various means of communication. The…
Dystonia Physio Exercise Hub
Dystonia Physio Exercise Hub is an online platform for physiotherapists where they can create individual training programmes for their cervical dystonia patients. The platform is an initiative by Swedish physiotherapist Johanna Blom and Dystonia Europe, and funded by Boston Scientific Foundation. The digital tool was launched in Swedish first and very soon translated to five…
Finnish Dystonia Association 25th Anniversary
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…
6th International Dystonia Symposium in Dublin
After twelve (!) years of waiting and five (!) years of preparations we finally gathered in Dublin to convene the Samuel Belzberg 6thInternational Dystonia Symposium. After the Barcelona meeting in 2011, we heard that it was the best dystonia symposium people had ever attended; we hear now that the 6th one was even better! Three days…
