The Sudden Onset In 2016 within a few days I lost my ability to walk and talk. I transitioned from a healthy 13 year old to one who couldn’t move or even speak. After months in hospital I was eventually diagnosed with severe Functional Neurological Disorder (FND) and Dystonia. I was suddenly and severely disabled,…
Physiotherapists Train to Improve Dystonia Care
A specialised physiotherapy course focusing on dystonia recently brought twenty physiotherapists to the National Hospital for Neurology and Neurosurgery (Queen Square) in London. Hosted by physiotherapist Hanna Louissant and organised by Dystonia Europe, the workshop aimed to strengthen knowledge of physiotherapy as part of dystonia treatment. Opening the course, Monika Benson emphasised the long-term goal of improving treatment outcomes and quality of life…
Sixth National Dystonia Day — Don Gnocchi Foundation
Milan, 27 September 2025 Theme: “From diagnosis to treatment: the role of the multidisciplinary team in dystonia” . On Saturday, September 27, the Don Gnocchi Foundation hosted the sixth National Dystonia Day, promoted by A.R.D. (Italian Association for Research on Dystonia). A packed hall, focused presentations, and a strong sense of concreteness marked the event,…
Rare Disease Day: Solidarity, Awareness, and Hope for People Living with Dystonia
Given the wide variety of rare dystonia types, the Children’s Joy Association in Romania stands in solidarity and marks Rare Disease Day each year as an essential effort to raise awareness among both the general public and specialists in this field. Rare Disease Day was celebrated through an emotional and deeply supportive event, where empathy…
The Finnish Dystonia Days 2025 – Themes: Research, Treatment and Experience
The Dystonia Days 2025 of the Finnish Association were held in Kouvola, South Finland in September. Some 50 members gathered to meet each other, to get new information about dystonia and to give and to deliver support and share their best practices, how to live with dystonia. The theme of the days were research, treatment…
