Only 8 days to go to submit your mentee application! Deadline July 1st!

As we are coming closer to the deadline, just a gentle reminder to submit your mentee application for the ENMC Mid-Mentoring Programme to enmc@enmc.org.

We are looking forward to your applications.

Please, check out the guidelines and application form here

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.