On the 23rd April, EPF held their Annual General Meeting online. Dystonia Europe is a member of EPF (European Patient Forum). An opening speech was given by Marco Greco, EPF President and Anca Toma, EPF Executive Director. EPF is the leading voice of patient organisations in Europe and promotes patient advocacy. They bring together people,…
AMADYS, France: Workshop on Focal Dystonia: Treatment and Rehabilitation
Since 2018, we have been organising training sessions on the rehabilitation of cervical dystonia and function (writer’s cramp) given by Dr. Jean-Pierre Bleton, in the regions, in person, by communicating with local medical professionals and their federations or health care institutions. We wanted to organise a session for the Paris area and Dr. Bleton had…
Meet Sandra Valenzuela, Italy
What is your name? My name is Sandra Valenzuela. I am 51 and I am Argentinian but I have been living in Italy since 1992. I am a classical and Spanish dance teacher but due to dystonia I could not work as a professional. During my last years of high school I realised that…
Finnish Dystonia Association Spring Meeting in Wintery Joensuu
People from the left: Board members Martti Ketonen and Leea Sihvo-Rajala, local volunteers Paula Hiltunen and Tuula Hirvonen (in front), board member Paula Happonen, and president Jukka Sillanpää, secretary Taina Lehtinen, and local volunteers Jaana Vainio and Aarno Komu. Photo: Tytti Svetloff, Finnish Parkinson’s Association After two years with restrictions to assemble due to COVID-19 pandemic,…
Meet Martina Kühn, Chairwoman Dystonie Förderverein Deutchland e. V. Germany
What is your name? My name is Martina Kühn What are the benefits of working within a patient organisation? My mother has blepharospasm among other issues. Even though I do not have dystonia myself, I’ve come to realize over time how difficult living with dystonia can be in certain situations. More than 14…
