As we informed you in an earlier our newsletter, we are working on a very exciting project – a series of dystonia awareness videos. The aim of these videos is to show the symptoms of different types of dystonia for better understanding by people who have never heard of this disorder. The videos will be…
EFNA Board Meeting in Brussels
The following day there was an EFNA board meeting. Orla Galvin, EFNA Executive Director, presented the preliminary results of the survey on assessing diagnosis and care pathways of people living with neurological disorders in Europe. Over 1000 participants from 23 different countries participated in the survey. Some of the results show that: 32% of people…
Presentation of the DMA at the EAN 2022 Basal Ganglia Club Session
European Academy of Neurology is a non-profit, independent organisation representing more than 45,000 members, as well as 47 European national societies. The 8th Congress of the EAN took place in Vienna in June this year. EAN Congress is one of the biggest neurological events in Europe. This year 380 lecturers and 5300 onsite participants took…
Meet Sandra from Denmark: My Journey with Dystonia
My name is Sandra, and I am from an island called Fyn in Denmark. I do not have dystonia myself, but my mom does. She has generalised dystonia and uses a wheelchair. My story will not be about having dystonia. My dystonia story will be about my experience growing up with a parent with dystonia….
EFNA 21st Anniversary Celebration in Brussels & EFNA Advocacy Awards 2022
Last May EFNA, the European Federation of Neurological Associations, celebrated its 21st Anniversary in Brussels, Belgium. The organization was founded in 2001 and the initial plan was to hold the 20th Anniversary event last December in 2021. Due to the pandemic it had to be postponed. It was a happy reunion in Brussels where many…
