ENMC will be present at the 26th Congress of the DGM!

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.

 

 

 

 

New article about 30 years of ENMC in the journal of NMD!

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:

  • Organized 270 workshops
  • Established a network of over 4500 participants from more than 65 countries and from 5 continents.
  • Published 270 lay reports on our website and over 220 full papers in neuromuscular disorders with a high average mean normalised citation score of 1,24.

ENMC supports the next generation of leaders in the neuromuscular field. Read the full article about our journey and future goals here.

 

Submit your workshop application before March 1st!

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. 

Upcoming ENMC workshops 2023

We are proud to announce this year’s first confirmed workshops

  • 10-12 March 2023: 270 – Consensus for SMN2 genetic analysis in SMA patients?

    Organisers: Dr E. Bertini (Italy), Dr F.D. Tiziano (Italy), Dr E. Tizzano (Spain)

  • 16-18 Juni 2023: 272 –  Inclusion Body Myositis: 10 years of progress—revision of the “ENMC 2013 diagnostic criteria for IBM”

    Organisers: Prof. Conrad Weihl (US), Prof. M. de Visser (NL), Prof. J. Schmidt (Germany).

  • 20-22 Okt 2023: 271 –  Third ENMC meeting on SBMA: Towards a unifying effort to fight Kennedy’s Disease.

    Organisers: Dr M. Pennuto (Italy), Dr G. Sorarù (Italy), Dr L. Greensmith (UK), Dr P.F. Pradat (France)

 

Newest lay reports

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?

Meet our new Operational Manager!

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.

Mentoring Programme application: deadline July 1st!

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”

New updates World Muscle Society (WMS) guidelines on Covid-19 and vaccines

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.

 

NEW: Themed workshop applications!

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:

  • is preferably of interest for several neuromuscular conditions and if relevant even require sharing experience outside the neuromuscular field (transversal workshops).
  • require a multidisciplinary approach, i.e. a heterogenous group of participants, such as clinicians, health care professionals, basic scientists, patient and pharma representatives, technical experts and external specialists etc. need to take part in the discussions.
  • are topics and/or diseases that are not often discussed in a workshop, that are unique in the sense that the theme is of added value for the neuromuscular community and that there is no duplication of efforts.
  • are groundbreaking and strategic and require therefore development of a sustainable platform or consortium in the future.

 

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:

  • Can we use the workshop platform to give an overview of the development of the WMS guidelines on Covid-19 management and vaccination of patients affected by a neuromuscular condition (NMD)?
  • What can the NMD field bring to non-NMD patients affected by Covid-19, who have developed neuromuscular signs and symptoms? Definition of possible projects involving these Covid-19 patients and funding opportunities.
  • What can we learn from telemedicine (e-health) alternative ways of monitoring NMD patients during self-isolation and/or in clinical trials?
  • Can we formulate guidelines on psychological and physical exercise support for NMD patients who are or have been on strict self-isolation during the Covid-19 pandemic?
  • Can this workshop be a starting point for the establishment of a “Post-Covid-19 consortium”, which will continue work on this topic and e.g. start a registry of patients affected by NMD in future Corona endemics?

Application selection criteria for Themed workshops:

  • Same guidelines as for the regular open call.
  • Due to the transversal and multidisciplinary character of the themed workshops, the number of participants may reach a maximum of 30 persons.
  • Due to the multidisciplinary character and the broad impact of themed workshops, applicants are encouraged to disseminate their results through multiple channels and papers.

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