Another successful Dystonia Awareness Month has taken place. It is amazing to see all the dystonia awareness activities taking place across Europe and around the world. There were special dystonia days and fund raising activities organised by our member associations. Special social media content with information and education on dystonia was created and shared. In…
Hello There – Meet Ulrike Halsch, President Dystonie und Du e.V, Germany
What is your name? My name is Ulrike Halsch What are the benefits of working within a patient organisation? The voluntary work in the patient organization is a lot of fun and is very diverse, but it requires a lot of responsibility. It is not guided by economic interests and has a social value because…
Have you signed up for EFNA’s eLearning content yet?
In late 2020, EFNA launched a pilot series of online e-learning modules on advocacy-related topics. These courses aimed to upskill participants on how they can effectively advocate in a virtual world by identifying and engaging key stakeholders and developing partnerships, hosting successful online events and developing and disseminating key advocacy messages. The courses are video-based…
DDF and DE met in Copenhagen to plan for Dystonia Day 2022
This week Executive Director Monika Benson met up with Sandra Theil Sörensen from the Danish Dystonia Association. They visited possible venues for the upcoming Dystonia Day 2022 and discussed the program and activities. It is with great pleasure we are collaborating with the Danish Dystonia Association for this face-to-face event. Due to the pandemic we…
EurDyscover Annual Meeting Update
On November 16 the annual meeting of the EurDyscover Consortium was held on-line. Professors Chi Wang Ip and Jens Volkmann welcomed the participants. Each working group then gave a presentation and update on the progress of the work. The Consortium includes specialists from dystonia expert centers in Germany, Czech Republic, France, Italy and Portugal. By…
