During Awareness Week 2020 The European Federation of Neurological Associations (EFNA), launched a survey on Stigma and Neurological Conditions . EFNA represents 20 European and International associations across a wide variety of neurological disease areas, such as multiple sclerosis, epilepsy, migraine, ADHD, Movement Disorders such as Dystonia and Parkinson’s, to mention just a few. In…
Rare Disease Day
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals…
Busy week in Brussels
Last week of February Dystonia Europe attended the event ‘Brain Health as a Global Priority – Time for the EU to Act Now’ in the EU Parliament in Brussels. The meeting was organized by EFNA – European Federation of Neurological Associations, in collaboration with EAN – European Academy of Neurology, and EBC – the European…
Winter Think Tank 2020
Dystonia Europe Winter Think Tank was held in Lund, Sweden 14 February 2020. DE had a Board Meeting the day before, and the Think Tank members joined that evening for dinner. Members of the Think Tank are our Platinum sponsors: Boston Scientific, Ipsen, Medtronic and Merz. President Adam Kalinowski welcomed all to the Think Tank…
ERN-RND ePAGs Visiting Crona Clinic in Tübingen
The ERN-RND is a European Reference Network established by the EU to support patients and families affected by rare neurological diseases(RND) which requires much specialised knowledge, treatment and resources. Some diseases are so rare that the necessary knowledge might not be available in the patient’s nearest health centre or country. The patient doesn’t travel but knowledge…