Newsletter - October 2017

EURO-NMD features in WMS 2017 poster highlights

The EURO-NMD poster was chosen for the poster highlights session of the recent World Muscle Society conference in St Malo, France. Teresinha Evangelista presented the poster which focused on the structure, function and aims of EURO-NMD. The judges commented on how significant they felt EURO-NMD is for the who neuromuscular community. 


EURO-NMD first annual meeting approaches


Preparation for our first annual network meeting is well underway and we are looking forward finally meeting with network board members face to face in Freiburg, Germany next month. All board members are entitled to one free registration and a bursary to help with travel and accommodation is available.

At the meeting, there will be the opportunity for those healthcare providers who form part of the network to showcase one important aspect of their work via an ePoster. Abstract submission for the posters closes on Friday 27th October 2017.

Registration is still open on our website.


Spotlight on the network's secretariat


Project manager Becca Leary and project assistant Joanna Das have both now started in their new roles as part of the EURO-NMD secretariat completing the team for the initial phase of the network's implementation. Becca and Joanna will work alongside other members of the team which include the coordinator Professor Kate Bushby, clinical lead Dr Teresinha Evangelista and Michael Hails who will oversee the ongoing development of the project's website and communication strategy.

We look forward to working together with you all to build a robust foundation of procedures, strategies and systems to ensure our network is an efficient, effective, successful and interesting project for all of those involved.


Update on clinical patient management system


The network's clinical management patient system (CPMS) will, when launched, be the place where patients' cases will be analysed and discussed with health professionals across the European Union. The system is still in its testing phase but will be launched in due course.

Although the system has been developed to be a intuitive as possible inevitably those using it will have to learn various aspects of the system to be able to operate effectively as part of the network. The system's developers are very aware of this and are in the process of hosting a number of online webinars which you are welcome to attend. Further details about how to attend can be found here.

Additionally, our network healthcare providers have recently been asked to compile a list of those people willing to become the first CPMS users and we would encourage respond to this request promptly to ensure you are included.


EURO-NMD's information repository

All the dates for our upcoming webinars along with meeting minutes and many more useful documents can be found on the network's collaborative platform.

We are aiming to work with the platform and make it the place to visit for everything know or indeed access about EURO-NMD.

If you are officially involved with the network you should ensure you have a EU login and request access to the platform.

Building Connections

EURO-NMD is beginning to build strong connections with partners and our work develops.

We are proud to be part of the advisory board or ERN-RND (European Reference on Rare Neurological Diseases) we are also creating collaborations with the European Academy of Neurology, the European Paediatric Neurology Society, and the Peripheral Nerve Society.

These links will become crucial as we begin to endorse guidelines through our ERN.


Neuromuscular Translational Summer School


Save the date! 2-6th July 2018

This joint venture between TREAT-NMD and EURO-NMD will address the following translational research aspects:

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

Lasting five days, the Summer School will be held at the Institute of Genetic Medicine at the University of Newcastle upon Tyne. This comprehensive course will serve as a superb foundation for those wanting to direct their medical or research career in the direction of neuromuscular diseases.

Further details and agenda will be available soon. 


Specialist groups need your help

To ensure that the impact of the hard work that we have all invested so far in our network is maximised to its full potential, we kindly request that healthcare providers complete group surveys fully and promptly.

We realise that this is an extra burden on already very busy workloads but the better the quality information we all have to draw from in the very beginning of the project the more efficiently and effectively it will operate.