Beginning of April the Swedish Dystonia Association organised together with physiotherapist Johanna Blom from the Skåne University Hospital and partners: Abbvie, Ipsen and Merz, a one day workshop on Dystonia and Physiotherapy. Most participants had already taken part in courses stage 1 and 2 that have been offered in the past. 15 physiotherapists had come…
Exhibitions and Initiatives of the Children’s Joy Association Dedicated to Rare Disease Days
The Children’s Joy Association is committed to standing for patients with Dystonia and is a member of the National Alliance for Rare Diseases being a part of its Board. Some forms of neuromuscular Dystonia are considered rare diseases and the association plays an active role in supporting patients and raising awareness about these conditions. In…
5th National Dystonia Day in Italy
On September 28th Associazione per la Ricerca sulla Distonia ( A.R.D.) celebrated the 5th National Dystonia Day with a convention in Rome. The previous 4 Dystonia Days were online events, this year we decided to meet again in person but the whole Day was broadcast live on our social media for all those who could…
Luc Montigaud: a Tour of France for Dystonia, Research and Promoting Disability in the Workplace!
Luc Montigaud is a 24-year-old Business School graduate living near Aix-en-Provence. He has suffered from dystonia since birth, which causes him difficulties with speech and fine motor skills. At the General Assembly in Paris,May 2023, Luc presented his crazy project to AMADYS members: to complete the Tour de France by duathlon (10km run each morning,…
Autumn Meeting with a Focus on Breathing and Relaxation
For us with dystonia we can never get enough of learning more about breathing, relaxation and the importance of bending and stretching. At the autumn meeting of the Norwegian Dystonia Association in Tromsø on 21 September Ina Borch gave us new and exciting approaches in this regard. – We take our breath for granted, and…
