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…
Specialized Physical Therapy Reduces Disability and Pain in Cervical Dystonia
September the 21st was a memorable day for Joost van den Dool. On that day he successfully defended his PhD thesis at the University of Groningen in the Netherlands. His research focused on the effectiveness of a standardized physical therapy program for patients…
