On 17th April 2021, EPF Members gathered online for the 18th Annual General Meeting (AGM). EPF-European Patient Forum is a strong and transparent pan-European organisation that Dystonia Europe is a member of. President Adam Kalinowski and Operations Manager Merete Avery participated in the meeting, representing Dystonia Europe. EPF has a Board of 9 volunteers and…
The Positive Twist a Podcast about Dystonia
In September last year Dystonia Europe launched the first season of its podcast: The Positive Twist. The activity was part of the Digital Dystonia Days project 2020 and made possible with the generous support from Boston Scientific, Ipsen and Medtronic. Together with Amanda Benson at The Rise Factory we developed a programme which included dystonia…
Dystonia Organisations Worldwide
Recently Dystonia Europe launched a new page on its website with the collection of dystonia organisations worldwide. At the moment you find organisations listed in Europe, North and South America and Australia. https://dystonia-europe.org/about-us/dystonia-organisations-worldwide/ We hope that this page can support and help dystonia patients and medical profession in finding the dystonia patient association they are…
Finding Success in Career, Love and Life, in Spite of Living With Cervical Dystonia, Featuring Emmanuel Dalmas
In this episode we get to know Emmanuel Dalmas from France. He tells his very inspiring story of finding success in all aspects of life, in spite of living with dystonia. It took Emmanuel 20 years to receive the right diagnosis, a problem that we hear about all too often. He shares with us what…
Patient Engagement in EU-Funded Brain Research Projects
15-21 March was the international Brain Awareness Week in 2021, an educational initiative aiming to raise awareness of brain and research. During this week on 16 March, EBC, in partnership with EFNA & GAMIAN-Europe held a webinar on patient engagement in EU funded Brain Research Projects within research, health and policy making. Patient engagement in…
