The cervical dystonia patient journey was published two years ago. Currently is is being translated into more languages. These are published on the ERN-RND (The European Reference Network for Rare Neurological Diseases) website. https://www.ern-rnd.eu/disease-knowledge-hub/dystonia/ We hope that this patient experience map will support patients who are newly diagnosed as well as other dystonia patients and…
JUST PUBLISHED: The Third New Edition of The Manual of Botulinum Toxin Therapy
The year 2024 begins with a new book: The Manual of Botulinum Toxin Therapy, one of the best-selling botulinum toxin books, has now been published in its third new edition by Cambridge University Press. ‘We are delighted that this book has been able to establish itself over the years as the standard work on…
SPRINT PROGRAM: Sensorimotor Retraining Program For The Re-habilitation of Isolated Cervical Dystonia in Conjunction with Neurobotulinum Toxin
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…
