Last weekend the French Dystonia Association, AMADYS, celebrated its 30th Anniversary in Lyon, France. Over 200 participants had come from all over France to take part in the event. President Edwige Ponseel welcomed everybody and wished them a fun and festive day. Professor Vial, member of the AMADYS Scientific Committee, was proud to welcome the…

The 24th Dystonia Europe General Assembly was held on 12 May at the IBIS Styles Roma Hotel in Rome, Italy. Representatives from 15 of the 21 member organisations were present. They were from: Croatia, Norway, Denmark, Sweden, Finland, the UK, France, Germany, Ireland, Italy, Poland, Switzerland and Romania. President Merete Avery welcomed everybody to the…

Our congratulations to Dr. Niccolò Mencacci and the David Marsden Award 2017 for his paper: “A Missense Mutation in KCTD17 Causes Autosomal Dominant Myoclonus-Dystonia”. Dr Mencacci was presented with the award by Dystonia Europe President Merete Avery at the D-DAYs 2017 held in Rome last weekend. Dr Mencacci expressed his thanks to DE and Ipsen for the…

The Dystonia Europe D-DAYS 2017 and 24th Annual Conference and General Assembly were  held on May 12,13 and 14th in Rome. It was a joint event between Dystonia Europe and the Italian Association “Associazione per la Ricerca sulla Distonia ” A.R.D.  who celebrated its 25th anniversary, as it was founded in Rome in March 1992…

A 2-day workshop on Governance was organised by the European Federation of Neurological Associations – EFNA, in Dublin, Ireland last week. It was held alongside the Extra General Assembly and members of the EFNA Board as well as representatives of member organisations from disease areas such as epilepsy, Huntington’s, ADHD, ataxia, Brain tumor and more…