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The European Neuromuscular Centre (ENMC) is looking for two new, enthusiastic employees!

Every month, ENMC brings together doctors, scientists and patients from all over the world, each with their own expertise in and experience with neuromuscular diseases. We use this strategy to achieve our mission: to speed up the progress in basic and clinical research and help develop therapies for these often ultra-rare conditions. Our team in Baarn is expanding and that’s why we are looking for a new Management assistant and a Senior Operational Manager.

If one of these two challenging positions match your level of project management, experience in e-communications and organisational talents you might be the right person we are looking for! We can offer a flexible and pleasant work environment in a non-profit organisation that is governed by 10-European patient associations.

Do you want to team-up with us, but also work independently, take initiative, and solve problems quickly, we would like to invite you to apply for a job at ENMC.

-Parttime functions (flexible hours)
-Office-based in Baarn, The Netherlands, but working partially from home is optional
-Salaries and working conditions are in accordance with the Dutch “CAO Zorg en Welzijn”

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.