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…
Meet Pia, Chairwoman of the Danish Dystonia Association
What is your name? My name is Pia Vejle Why do you like helping others? I always had this thing about helping other people, making other people smile is the best gift. When I was around 15 years old (many years ago), it started out when some young children never got to the trips because…
