We are proud to present the ENMC Impact Report 2023! Read about our 2023 activities via this link.

If you would like to receive a printed copy, please send your request to enmc@enmc.org.

After 10 years of working with much pleasure and dedication as ENMC Managing Director (MD), it is time for a new adventure! I will be leaving the ENMC as of 1 October 2023 and take time off to find a new chapter in my career.

Herewith I would like to thank you all for a wonderful time working together to improve lives of people affected by a neuromuscular condition. The ENMC is very close to my heart, but it is in the good hands of the ENMC board, Ana Ferreiro, Patricia van Dongen and Wilma Hinloopen, who will be your contact persons (enmc@enmc.org).

All the best!

Alexandra Breukel

ENMC’s contribution to reduce CO2 emissions

ENMC brings on average 250-300 persons per year from all over the world to The Netherlands. This number mostly comprises participants of ENMC workshops; e.g. in 2019 we hosted 250 workshop participants at our hotel venue in Hoofddorp. But also members of the Research and Executive Committee fly in for the bi-annual ENMC board meetings. Most people travel by airplane (70-80%), the rest travels by car and by train. Plane travel and car journeys are particularly impactful on the climate¹, hence we felt it is time to take our responsibility as organisation and try to help reducing global warming, even if it is a small portion. The high level of CO2 emissions are a cross-border problem and requires a European approach.

ENMC prefers travel by train

As of January 1, 2021, ENMC encourages that workshop participants and members of the ENMC Committees take the train instead of a plane. This may e.g. be applicable for people who can reach the meeting destination near Amsterdam within a total of eight (8) hours of travel time. We understand that people may require taking a plane because of personal, geographical or work-related reasons; it is not always convenient anytime for everyone. Therefore, this train preference is not mandatory and hence ENMC is not withdrawing its reimbursement policy for plane or car travel.

European guests coming from ENMC countries

Within Europe, travelling by train is becoming more the gold standard, even more so since the start of the Covid-19 pandemic and the subsequent flying restrictions. Therefore, it is now the right moment to encourage our European guests to take the train instead of a plane. The ENMC will cover the train tickets for persons coming from our member countries (UK, NL, Germany, France, Italy, Denmark, Finland, Austria, Switzerland). Although the train takes longer than a flight, it saves waiting and check-in time at airports and it may provide precious workhours. If booked at an early stage, 1st class (or Standard Premier) tickets can be just as economical as the 2nd class (or standard) ticket. To encourage train usage, ENMC will additionally cover: 1) 1st class (or standard premier) train tickets if booked in advance at a reasonable rate (< 300 euro), 2) cancellation fees for train tickets bought ahead of time and 3) one overnight stay due to the longer train trip or inconvenient travel times. In this case, the hotel will be booked by ENMC.

European guests from non-ENMC countries.

European guests not from ENMC member countries, are also strongly encouraged to prioritise travelling by train to take climate responsibility. ENMC will encourage the co-sponsors to cover additional costs due to train travel in line with the above-mentioned ENMC’s reimbursement policy for participants from ENMC member countries.

Guests from outside Europe

It is clear that participants from outside of Europe cannot take trains for their entire journey. However, if they are combining their participation in an ENMC meeting as part of a longer trip to Europe, they may wish to consider travelling within Europe by train. Physical presence at a meeting should only be considered if it is mandatory for the meeting’s success, e.g. because the person is one of the workshop organisers or has a presentation and/or contribution which is key to the outcome of the workshop. ENMC has recently set up hybrid meeting facilities, which makes it possible for people coming from these areas to attend (parts of) the meeting online. For persons coming from outside of Europe, but within train distance from the Netherlands (e.g. Eastern part of Russia), ENMC encourages train travel to The Netherlands.

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.