ENMC White Paper

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 White Paper. 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.

 

Next workshop application deadline: 1 March 2020

ENMC workshop applications can be submitted the whole year through, however we have scheduled only two review moments per year: one in the spring and one in the autumn. The next deadline for sending in applications for workshops in the autumn review round is:

1 March 2020

 

The forms to be completed for a workshop application can be downloaded here.

Incomplete applications will not be processed. If you want the office to preview your application on completeness and accurateness, please submit your application anytime but at least 2 weeks before the submission deadline. Applications submitted after the deadline will be processed in the following review round.

The 2nd report of the special ENMC workshop on the role of the neuromuscular patient in Shared-Decision-Making!

 

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

 

ENMC bibliometric report published

The CWTS bibliometric report on ENMC workshop derived publications is now available.

Publication on the impact of 25 years ENMC workshops

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.

Press release – ENMC publication about the role of patients in NMD research

Expand the role of patients, the true experts, in neuromuscular disease research, is the conclusion of this international ENMC workshop !

JND Press release February 2019

Lochmüller et al, full paper PDF of full paper

New ENMC Research Director !

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.

Announcement: As of 2018, ENMC relocated its workshop venue

ENMC organises its workshops at the venue of the new hotel:

Courtyard by Marriott Amsterdam Airport
Bosweg 15
2131 LX, Hoofddorp
The Netherlands

Phone: +31 23 556 9000

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