From left: Leonardo on the rope and Giorgio on the bicycle. During the month of March in our social media we have launched the project “ Le DIstoniadi – anche il tuo passo conta” which means “ DystOlympic games – your step counts too”. We asked our followers to send us videos and photos of…
My Dystonia Patient Story
My Dystonia Story by Emilia My dystonia story began at the age of 17. I am currently 39 years old. At the beginning, I was taking medications and had botulinum toxin injections, which helped. Except for maybe for 4 years I had peace, then my disease was in remission. In fact, I think my attitude…
Dystonia Webinar Series
Last month, on April 22nd, we hosted our 8th webinar out of the 10 planned until end of June this year. The project was launched last year since we could not meet face-to-face for our annual conference due to the Covid-19 pandemic. The webinars have created an excellent opportunity to invite dystonia experts in various…
Virtual EFNA General Assembly 2021
Joke Jaarsma, President EFNA On 19 April the Annual EFNA General Assembly was held on-line via Zoom. President Joke Jaarsma opened the meeting and welcomed the participants. After today’s meeting there are now 19 member associations representing various neurological umbrella associations in Europe. The morning session included the formal part. Executive Director Donna Walsh presented the…
EPF AGM 2021
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…
