After using some parts of my story as background for a presentation on “Living with Dystonia”, I was strongly encouraged to share my story in the Norwegian Dystonia Newsletter. I was born on the west coast of Norway in 1954 and have had dystonia since 1985. Normal life: Like most of us, my life started…

Research has shown that Botulinum toxin injections (BoNT-inj) combined with physiotherapy provide good benefit for most people with cervical dystonia (CD).  Advanced treatment with Deep Brain Stimulation (DBS) also requires physiotherapy. Repetition of exercises is important to influence brain remodelling and achieve long-term improvements. Exercises should be individualised according to the pattern, nature and   problem…

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…

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…

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…