The 26th Congress of the Medical and Scientific Advisory Board of the German
Muscular Dystrophy Society will be held in Essen from 23 to 24 March 2023. This innovative, interdisciplinary and visionary congress will atract many participants!
Ofcourse ENMC will be present as well.
On March 24 we will host a booth at the Congress
On March 25 (Patient-participation day) we will host a booth especially for patients.
In celebration of ENMC’s 30th anniversary we’d like to share with you this article about our impact so far!
Over the last 30 years ENMC has:
ENMC supports the next generation of leaders in the neuromuscular field. Read the full article about our journey and future goals here.
As we are coming closer to the deadline, just a gentle reminder to submit your ENMC workshop application to enmc@enmc.org before March 1st! If you need a pre-check by the ENMC office, please do not send your proposal later than 20 February 2023.
We are looking forward to your applications!
Before submitting, please check out our guidelines and application form here.
We are proud to announce this year’s first confirmed workshops
Organisers: Dr E. Bertini (Italy), Dr F.D. Tiziano (Italy), Dr E. Tizzano (Spain)
Organisers: Prof. Conrad Weihl (US), Prof. M. de Visser (NL), Prof. J. Schmidt (Germany).
Organisers: Dr M. Pennuto (Italy), Dr G. Sorarù (Italy), Dr L. Greensmith (UK), Dr P.F. Pradat (France)
The ENMC attaches great value to informing the community of the progress and results achieved at each ENMC workshop. Therefore, both a lay report and a scientific full paper will be written by the organisers of the workshop, in collaboration with all workshop participants. Patients and patient representatives play an important role in ensuring lay language is used and disseminating the lay reports within the public domain.
We are proud to share two brand new lay reports from ENMC’s 268th and 269th workshop. You can read them by clicking the title below!
Lay report: 268th ENMC workshop (September 30th – October 2nd 2022)
Genetic diagnosis, clinical classification, outcome measures, and biomarkers in
Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials.
Lay report: 269th ENMC International Workshop (December 9th – December 11th 2022) Clinical trials in DMD: Ten years on, what have we learned? How can we optimize future trial design?
We are very pleased to introduce to you our new Operational Manager Ms Wilma Hinloopen!
Ms. Hinloopen is a physiotherapist by training. For the last 30 years she has worked in different companies where she was active in the field operational- and project management.
Wilma is organising workshops and is taking care of all financial and HR administrative matters. She is also the contact person for the ENMC Executive Committee and patient participation.
We are proud to introduce the second application round of an exciting new initiative from ENMC aiming to support the next generation of leaders in the neuromuscular field. The Mid-career Mentoring Programme has been developed for people who wish to seek mentoring in order to become independent researchers and/or potential future leaders in the NMD field.
We are looking forward to your applications! Apply here before July 1st
Read more about the Mentoring Programme here.
Dr. Nicole Voet -one of the current mentees- shares her experience:
“Mentoring is available in other settings, too. What I like of this programme is that it is specific for the neuromuscular field”
The WMS has provided advice for people with neuromuscular disorders, and their healthcare providers since the start of the COVID-19 pandemic. Here you can read the most recently updated version of the document (version 23 April 2022) on how to act upon a Covid-19 infection.
WMS COVID-19 advice (updated 23-04-22)
Also the WMS consortium reviewed and updated the document aiming to answer questions regarding the newly developed vaccines against Coronavirus SARS-CoV2 asked by people with neuromuscular disorders.
WMS vaccines and therapeutics (version 23-04-2022)
This is a rapidly developing field, and the WMS will keep this advice in regular review.
Please go here directly to the WMS site regarding Covid-19.
Covid-19 has had a huge impact on our life over the last two years but the vaccination has done its work and we have good hopes that we can manage upcoming variants with the new insights. Countries have opened up and international travel is possible again. ENMC is currently organising many face-to-face workshops, which are innovated with a professional hybrid set-up.
In addition to the regular ENMC workshop applications (next deadline is 1 September 2021!) where topics of the workshops originate from the workshop organisers, the ENMC is proud to announce the new concept of “Themed Workshops”. For this type of workshops, the ENMC will identify special themes which are prioritised by the needs of the neuromuscular patient and research community (see Addendum for Themed Call) and which are transversal, multidisciplinary, unique and sustainable.
Themed workshop applications in 2021 (submission deadline is 30 September 2021!)
The proposal for the theme of 2021, taking into account the above criteria, the high importance and urgency of the topic for the neuromuscular patients, is:
Post-Covid-19:
Issues and opportunities for the neuromuscular field
Learning experiences from the Covid-19 pandemic regarding neurological, psychological, immunological, social, economic, technical etc. aspects for neuromuscular patients in self-isolation and SARS-CoV2-virus infected people who developed neuromuscular symptoms.
The rationale for selecting this workshop theme this year is to learn from the Covid-19 pandemic and the way NMD patients were assessed and care managed during the self-isolation period. For example to learn from novel monitoring techniques, which were implemented during the current pandemic out of necessity, and adopt them for the regular care management of NMD patients in the future. But also to understand how neuromuscular signs and symptoms have developed in non-NMD patients who were infected by the Corona virus.
This Post-Covid-19 theme adheres to the requirements for the Themed Workshops since it:
Call for Applications!
Organisers, who would like to pick up this theme and apply for an ENMC workshop, are free to further define the rationale, background, objectives and resulting deliverables of the workshop, according to the regular Grant Application Guidelines and its Addendum regarding Themed Calls (Step 2: Application guidelines – ENMC). Some workshop questions were suggested by the ENMC Research and Executive Committee, which are not mandatory to include in the applications, but perhaps are a source for inspiration:
Application selection criteria for Themed workshops:
Timeline (for the first Themed Workshop Call in 2021):
June 2021: call opening
30 September 2021: deadline for submission of workshop applications. In case you have questions, please contact the office at least two weeks before the deadline
October 2021: review and rating of the received themed workshop applications by the ENMC Research Committee, separately from the review of the open call applications
November 2021: selection of one themed workshop application by the ENMC Executive Committee. If two applications are complementary and may well integrate with each other, ENMC may accept to organise both workshops or merge them into one workshop
December 2021: Communication of the decision by the ENMC office
Following year: Execution of the themed call workshop(s) in a face to face setting in 2022
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.
ENMC will be present at the 26th Congress of the DGM!13 March 2023 - 12:05
New article about 30 years of ENMC in the journal of NMD!27 February 2023 - 12:02
Submit your workshop application before March 1st!9 February 2023 - 15:05
Upcoming ENMC workshops 20236 February 2023 - 16:29
Newest lay reports6 February 2023 - 14:56