ENMC has a unique concept of facilitating and organizing workshops for experts in the field of neuromuscular conditions. Every month a group of 20 – 25 researchers, clinicians, patients and industry representatives, come together in a meeting venue in the Netherlands to exchange state-of-the-art knowledge of and experiences with a neuromuscular condition. Amongst the main deliverables of these workshops are:
- a full publication in the journal of Neuromuscular Disorder to disseminate workshop outcomes to other researchers and clinicians working in the field
- a lay report on the ENMC website to inform patients and their families about what has been achieved at the workshop
- networking and collaboration
- define trial readiness and outcome measures
- consensus about guidelines for diagnosis, therapy and care
Our Director of Research, Neil, was in Amsterdam at the beginning of December, taking part in the 238th ENMC workshop.
The workshop was entitled ‘updating management recommendations of cardiac dystrophinopathy’ and Neil joined clinicians, researchers and patients from across Europe and beyond.
Action Duchenne present parent’s perspective to healthcare professionals
