Last July the 5th Dystonia Europe Think Tank was held in Lund Sweden. The Think Tank is held twice a year and members are the Dystonia Europe Board and two representatives from each one of our Platinum Sponsors: Merz, Medtronic, Ipsen and Boston Scientific. Together we discuss projects and activities, whit the best interest of…
Didi Jackson | In Memoriam
Dystonia Europe announces, with great sadness, the passing of our former President, Didi Jackson on 14 February, 2018. The 1980s and early 1990s were the early days of dystonia becoming better-understood by the medical profession, and it was very difficult for patients to obtain good information and medical advice. Didi received her own diagnosis and…
EFNA/BMP UPDATE | Summer 2018
It’s been a busy start to 2018 for the European Federation of Neurological Associations [EFNA]. Training Initiatives for Neurology Advocates Already, there has been two workshops as part of its Training Initiatives for Neurology Advocates [TINA]– with both including dystonia delegates. The first was another national workshop in Romania, to celebrate Brain Awareness Week…
Norway | Norwegian Dystonia Association 25 years
Norway The week after the Dystonia Europe 25th Anniversary events, NDF, the Norwegian Dystonia Association, held its 25th Anniversary celebration and Annual General Assembly at hotel Olavsgaard, just outside of Oslo. 75 dystonia patients and family members from across Norway had come to the event. Saturday morning, after registration, NDF Chairman Johann Arnfinn Warvik, welcomed…
Neurology training in Lisbon – Value of Patient Perspectives and Preferences
Training Initiatives for Neurology Advocates [TINA] workshop took place at the Champalimaud Foundation in Lisbon 17th and 18th of April 2018. The TINA workshops project was launched in 2016 by the European Federation of Neurological Association [EFNA] and is being continued to teach patients how to use the theoretical knowledge gained on these processes,…
