Enrico Saibene, A. Crippa, M. Ramella, G. Giacobbi, C. Corrini, D. Anastasi, A Castagna Isolated Cervical dystonia (ICD) is a movement disorder characterised by intermittent or sustained involuntary contractions that cause altered postures or abnormal movements, also tremors, of the head, neck, with occasional involvement of the shoulders. For about thirty years, the efficacy of…
EPF Leadership Meeting & AGM in Brussel
Dystonia Europe is a member of European Patient Forum (EPF) and participated at the leadership meeting 13 April and at the Annual General Assembly 14 April in Brussel. The leadership meeting started with opening remarks by Marco Greco, EPF President. Patient organisations face a new environment with AI (Artificial Intelligence) and it is essential with…
Empowering digital health advocacy – the inaugural Ambassador Seminar of the Boston Scientific Foundation Europe
In March, Monika Benson participated in a meeting of the Boston Scientific Foundation Europe (BSFE), which convened her fellow Board members and Ambassador representatives from across Europe. The two-day meeting was filled with purpose and enthusiasm, focusing on upskilling the Ambassadors to enable them to effectively fulfil their roles with support from Monika sharing her…
Meet Marius, Romania
What is your name? I’m Crainic Marius, I live in Timisoara, Romania. What are the benefits of working within a patient organisation? Working in an NGO (non-governmental organisation / non-profit organisation) brings numerous benefits, including positive social impact, personal and professional satisfaction, skill development, building networks, learning and awareness opportunities, diversity and flexibility in the…
Board Meeting and Think Tank in Paris
When my dystonia first started I found it very debilitating and would not leave the house on my own. Fast forward a few years, and lots of rounds of botulinum toxin, and here I am travelling around Europe on my own! I love my work with Dystonia Europe and it has given me lots of…
