This week the Efpia Think-Tank meeting was held in Brussels, Belgium. The about 30 participants from various European patient organisations and from the pharmaceutical industry were engaged in the roundtable discussions regarding several subjects such as ’pricing and reimbursement’, the work on the shared position paper on the ethical relationship between patient organisations, patients and…

The Norwegian Dystonia Association, NDF, held its Annual Meeting and General Assembly at Hotel Olavsgaard, outside of Oslo this weekend. About 50 members had gathered for the 2-day event. Chairwoman Anniken Hagen welcomed everybody and then informed about the past and upcoming activities and projects. The very successful 3-year physiotherapy project is soon coming to…

Principal investigator Pr. Pierre Burbaud of the Bordeaux University Hospital, in Bordeaux, France is looking for approximately 20 patients to be included in the study.  DYT1 dystonia is a rare disease. Many of these patients have already been operated for deep brain stimulation. For technical reasons, we aim to include non-operated patients. There are few of…

The new Dystonia Europe President Merete Avery from Norway and the DE Executive Director Monika Benson were invited to the Medtronic European Headquarters in Switzerland this week. Specialists from the Medtronic DBS Team gave valuable insights of the company’s work and mission. The programme also included a tour of the manufacturing site showing how various…

Today a BMP Interest Group Meeting was held in the Parliament in Brussels, focussing on ”Neurological and Chronic Pain Disorders at Work”.  MEP Jeoren Lenaers welcomed everybody and then followed presentations on the topic. Dr Chiara Scaratti from Besta Neurological Institute in Milan, Italy presented the results of the ”EFNA Patient Experience Survey: Focus on Stigma…