Members of a local group in The Norwegian Dystonia Association (NDF) gathered for a 2 day meeting on August 24th, in the beautiful Rømskog SPA outside Oslo, Norway. This was the first face to face meeting since the pandemic started and the members were very pleased to meet again. The program: Information of what NDF…
MyDystonia App Ambassador Meeting
MyDystonia is an electronic diary created for people with dystonia. This diary enables patients to monitor their symptoms and how those symptoms affect daily life. Patients can share insights with their doctor to discuss how to optimize their treatment approach. After years of experience and feedback from users, app ambassadors and advisors, in May 2021…
One Neurology
Workshop 29th July on One Neurology. One Neurology is an initiative that aims to unite and strengthen neurology-related groups to collaborative advocacy, action and accountability for the prevention, treatment and management of neurological disorders worldwide. EFNA (www.efna.net) together with the European Academy of Neurology (EAN), founded this patient-driven initiative, which includes a multi-stakeholder global partnership. Neurology is…
Medical Schools and Patient Involvement
MBE Alistair Newton Advisor Dystonia Europe A local medical school In my home town, St Andrews in Scotland, we have an ancient university with a fine medical school. A few years ago, the tutors created a Patient Partnership group, inviting local people with several different types of illness, to meet students in…
Emma, one patient who underwent DBS for dystonia and taught me a lesson
Benedetta Storti1,2, Camillo Foresti2, Roberto Donati 3 1 Department of Neurology, Milano Bicocca, Italy 2 UOS Neurophysiology, UOC Neurology ASST Papa Giovanni XXIII, Bergamo, Italy 3 UOC Neurosurgery ASST Papa Giovanni XXIII, Bergamo, Italy Introduction Dystonia associated with DYT1 mutation is an early-onset isolated dystonia usually first apparent with focal symptoms. Over time, the…
