We are proud to announce that the World Muscle Society became a new Associate Partner of the ENMC. Good to have more collaborations in the NMD field!
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 (email@example.com).
All the best!
To learn more of about the ENMC Mid-Career Mentoring Programme: Introduction – ENMC
Deadline for application 1 July 2023!
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.
28 March 2020
The World Muscle Society Position and Advice for managing COVID-19 in people affected by neuromuscular conditions
Dr. Maxwell Damian together with more than 80 specialists in the field collated the WMS Covid-19 advice for neuromuscular patients, carers, general neurologists and non-specialist medical providers. This advice is also intended to inform neuromuscular specialists particularly regarding frequently asked questions and basic service requirements.
The latest version (April 23, 2022) of the WMS position on Covid-19 and its advice on Vaccines can be downloaded here below respectively:
History of versions:
The advice is endorsed by the Members of the Board of the WMS (www.worldmusclesociety.org), colleagues from the Editorial Board of Neuromuscular Disorders, the official journal of the WMS, EAN Scientific Panel Muscle & NMJ disorders, ERN EURO-NMD, Treat-NMD and ENMC.
Arabic by Rasha el Sherif
Czech by Jana Haberlova
Chinese (Traditional) by Wen-Chen Liang
Dutch by Peter van den Bergh and Nathalie Goemans
French by Shahram Attarian
German by Benedikt Schoser (here also the link to the: Nichtinvasive Heimbeatmung NME Deutsch WMS recommendation + COVID-19 WMS Empfehlungen Update 10-MAY-2020 and the WMS Empfehlung Corona-Impfstoffe 23-12-2020, WMS-COVID19 Vaccine Impfempfehlungen 28Februar2021)
Hungarian by Rita Horvath
Indonesian Luh Ari Indrawati
Italian by Antonio Toscano (here also the link to the: 27-04-2020 WMS Covid-19 document Updated Italian version)
Japanese by Madoka Mori-Yoshimura, Wakako Yoshioka, Ichizo Nishino
Korean by Jongmok Lee
Malay by Khean-Jin Goh
Polish by Anna Kostera-Pruszczyk
Portuguese by Teresina Evangelista
Portugese (Brazil) by Mariz Vainzof (here also the link to the: WMS vaccines document Portugues -final)
Spanish by Montse Olivé
Swedish by Mar Tulinius and Anders Oldfors
Turkish by Haluk Topaloglu
For new updates and amendments of the Covid-19 advice and subsequent translations; click here
Also please see a directory of guidelines / information resources relating to neurological disorders as posted on the EPNS website. There is useful information also for NMD patients.
From Joshua Benditt MD, Medical Director of Respiratory Care Services and General Pulmonary Clinic in Seattle, USA, we received a COVID-19 Plan and Preparation Guide for Adults with NMD put out by one of the NMD United patient groups and designed for patients as to best practices to stay safe in the current situation.
For some of the sections, amendments were made: Update 02-04-2020 to WMS advice Covid-19.
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 CWTS bibliometric report on ENMC workshop derived publications is now available.
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