Newslettter - May 2019  ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌
Newslettter - May 2019
Registration deadline for this year's translational summer school is approaching fast!

Are you interested in gaining a solid understanding of the translational research pathway, from bench to bedside?

Then you still have time to register to attend our Summer School.

This week-long course which has been especially developed for researchers and clinicians interested in translational research is in association with TREAT-NMD and addresses the following aspects as it travels along this established pathway.

  • Bench to bedside research
  • Regulatory system
  • Clinical trials
  • Outcome measures
  • Patient communication
  • Registries and biobanks
  • Biomarkers and –omics

1st-5th July 2019 - Leiden, Netherlands

Attendees of the summer school will discover how networks such as the European Reference Network EURO-NMD and TREAT-NMD work and collaborate with patients and regulators to facilitate therapy development.

To ensure a high quality experience for all attendees course numbers are kept low and we recommend you register promptly to reserve your place as registration is due to close on 21st June 2019.


EAN and EURO-NMD establishes memorandum of understanding

EAN and EURO-NMD establishes memorandum of understanding  

We are delighted to announce that EURO-NMD has established a Memorandum of Understanding with the European Academy of Neurology (EAN).

The exciting and natural synergy will help raise the profile of rare neuromuscular diseases throughout the community and beyond. We anticipate that this exciting partnership will provide many opportunities for collaboration in the areas of education, dissemination and general visibility whilst always being mindful to reduce the duplication of effort in the field.

To highlight the beginning of this important new opportunity for all concerned, the Chair of the EAN Communication Committee Dafin Muresanu recently interviewed EURO-NMD's Coordinator Teresinha Evangelista the transcript of this is available on our website.


EURO-NMD at the European Academy of Neurology in Oslo


We are delighted to announce that representatives of EURO-NMD will be at the European Academy of Neurology in Oslo, Norway alongside fellow ERN, ERN-RND.

You can find us at booth C61

The overarching theme of the conference is "Neuroinflimmation - Science, Synergies, Solutions". Throughout the four days of the congress EURO-NMD will have an information booth and we would love it if you would drop by to say 'Hi' and find out a little more about our network and how it benefits the neuromuscular community. 

For those of you affiliated with the network and would like to find out about Clinical Patient Management System (CPMS) our helpdesk staff will be on hand to help out. You will be able to see the CPMS in action, have your questions addressed and receive one-to-one help with the different aspects of the system. To arrange a meeting to look at the CPMS whilst you are in Norway please contact Chloe Blewitt or alternatively 'call in' to the booth when you're passing! Don't forget booth C61!


Access our past webinars whenever you want!

Webinar Screenshot  

We realise that due to very busy work schedules that sometimes it can be very difficult to attend our webinars. But, did you know that all of the webinars we have organised or promoted are available to watch whenever is convenient to you?

Simply head over to our new webinar section of the website where you will be able find out everything you wanted to know about our webinars past, present and future. Here you can watch recordings of our past webinars and find out more about the ones we have planned.

If you have a presentation that you think would be interesting to the neuromuscular community and you can spare about an hour of your time to deliver it, then please get in touch with Chloe Blewitt who will be happy to help.


Clinical Patient Management System latest updates

CPMS Logo  
The latest version of the network's Clinical Patient Management System (CPMS) is now available for ERN members to use.

This new version includes among others recommended browsers for CPMS best user experience, IP addresses to be whitelisted by Hospitals and improved bandwidth requirements which should improve the user experience when video conferencing from within the CPMS. We hope those of you who use the CPMS will find these improvements useful and look forward to further improved interations of the system to be available in due course.

Any further questions about these updates or indeed the rest of the system can be directed to our helpdesk at or to


Save the date for the next EURO-NMD Board Meeting


We kindly ask those of you who are directly connected with our network to Save the Date for the next EURO-NMD Board Meeting which will take place in the Institute of Myology in Paris, France on Friday 19th July 2019.

We will send out reminder emails to our board members to ensure the maximum number of people register to attend.


International Summer School on Rare Disease Registries and FAIRification of Data

  EJP Logo

The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD).

The Course is made up of 5 days of residential training organized by Istituto Superiore di Sanità (ISS) in close collaboration with,…


Setting international standards for cross-border exchange of patients’ health data

On 19 March, the CEN International Patient Summary project organised its last conference. It presented its work on integrating the European guidelines on Patient Summary into international standards.

The aim of the initiative was to enable the use of the Patient Summary not only in cross-border care, but also in national and local exchanges, to allow patients and doctors to have access to the patients’ health data wherever the treatment takes place.

Indeed, the European Union is playing a key role in shaping eHealth developments throughout Europe and this advancement in the field of international cross-border healthcare, interoperability and standardisation could bring enormous benefits to the area of rare diseases.