Archive for category: News

On Rare Disease Day 2020, the outcomes and consensus from the ENMC workshop on “The position of the neuromuscular patient in shared decision making” are now published in a WhitePaper. The workshop participants represented a wide range of stakeholders from 15 different countries: patients and parents, representatives from neuromuscular diseases organisations, clinicians, health care professionals, researchers, societal and policy researchers, psychologists, ethicists, representatives from regulatory authorities and pharmaceutical companies. The White Paper is based on the outcome of the workgroup discussions (published by Lochmuller et al, 2019 and Ambrosini et al, 2019) and, in particular, it reports the consensus reached on specific recommendations for patient organizations and health care professionals, together with key examples analysed during the meeting.

It is a call to action to all stakeholders to become ambassadors and promote the direct involvement of people living with a neuromuscular disease in all aspects of health care and medicine development related to their disease.

The workshop took place in Milan, Italy in 2018 and was attended by 45 participants from 15 different countries.

Ambrosini et al. Orphanet Journal of Rare Diseases (2019) 14:126

Proud at our publication in Neuromuscular Disorders on “The impact of European Neuromuscular Centre (ENMC) workshops on the neuromuscular field; 25 years on …” by Alexandra Breukel et al.
Results from a bibliometric and quantitative analysis on workshop deliverables are shown in this publication.

Welcome to our new Research Director Dr Ana Ferreiro

Dr Ana Ferreiro, MD, PhD is the new ENMC Research Director as of January 1st 2019. We congratulate Ana on her new task within our organisation and look forward working with her.

Dr Ana Ferreiro is Research Director at the INSERM “Basic and Translational Myology” laboratory Unité de Biologie Fonctionnelle et Adaptative (BFA), Université Paris, France. She is also a consultant neurologist at one of the ERN centres: The Institut of Myology, Pitié-Salpêtrière Hospital in Paris.

We will be working on themes like patient participation in ENMC activities and encouragement of young scientists to join the ENMC network. Ana will accompany the ENMC office at several international NMD meetings and at ENMC workshops to meet with you in person.