The following article makes reference to certain companies and their products and any opinions expressed should not be taken to be the views of Dystonia Europe or its members. The articles are written by respected authors and are provided for the information of Dystonia Europe News readers. Dystonia is a heterogenous disease, which dramatically affects the…
Norway – Contact Person Training in Bergen Norway by NDF
The Norwegian Dystonia Organisation (NDF) held a training class for contact persons last October in Bergen, Norway. On the webpage NDF have listed contact persons from within the organisation who can be contacted about dystonia. It is important that all contact persons make it clear that they are not medically trained. A contact person is…
Making Dystonia Your Friend, with Monika Benson | The Positive Twist Podcast
In this episode we sit down with Monika Benson, Executive Director of Dystonia Europe. Monika has been living with cervical Dystonia for 19 years, and after years of feeling isolated she now feels as if she has a big “Dystonia family”. Around Monica’s 40th birthday, she started noticing her neck pulling to the left. She…
SURVEY – IMPACT OF COVID-19 ON NEUROLOGY SERVICE DELIVERY
A survey by the European Federation of Neurological Associations, in partnership with the European Academy of Neurology PURPOSE OF THE SURVEY Many surveys have captured the impact of the Covid-19 pandemic on patients’ access to treatment and care. With this survey, we want to better understand how care pathways were reconfigured for the neurology patient…
Webinar Series on Digital Health and Workshop by EPF
EPF (European Patient Forum) has held a series of webinars in 2020 on Digital Health. Dystonia Europe is a member of EPF (a leading voice for patient organisations in Europe, working with EU stakeholder and expert groups). DE has attended all the webinars and workshops held by EPF in 2020. Some of the topics in…
