Newsletter - December 2017

First annual meeting - a report


On Thursday 30th November EURO-NMD held its first annual meeting in Freiburg, Germany. All of our 61 healthcare providers (HCPs) from across Europe were offered a free registration along with a bursary for travel and accommodation. The remainder of the 123 registrations was made up of external attendees interested in finding out more about the new network, how it was developed and what it was planning to achieve.

The meeting was designed to reflect the different aspects of the network and as such the structure of the day, in part, mirrored the structure of the network itself. The programme, which now features links to a number of the talks, is available on the website.


European Commission launches its Horizon 2020 Health Research Programme 2018-2020 including rare diseases

On 27th October, the European Commission published the last Health programme of the Horizon 2020 research strategy. The programme intends to address the most important challenges on health, demographic change and wellbeing in Europe. Also included those that are of main importance for rare diseases: the rising and potentially unsustainable health and care costs, and health inequalities and access to health and care.


Early bird registration underway for 4th European
Academy of Neurology


The overarching theme for the Lisbon congress will be ‘Neurogenetics’. Diagnosis and treatment are increasingly using genetic methods and one purpose of the congress is to highlight clinically useful aspects of genetic medicine in Neurology. But as always, progress in all fields of neurology will be presented and participants will be updated about recent developments and news in clinical neurology. The selection of the educational programme is meanwhile organised within a newly adapted 5-year EAN educational curriculum. This curriculum is covering all important aspects a neurologist should learn and update in this period.


World Muscle Society Congress 2018


This is the premier annual congress on neuromuscular disorders, attended by established and young physicians, researchers, therapists and neuropathologists from all over the world.

You will have the opportunity to learn about the latest developments in world-wide myology during this 4-day international meeting from Wednesday 3rd October to Saturday 6th October, with an opening reception…


Neuromuscular Translational Summer School 2018


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.


EURO-NMD presents about care guidelines at TREAT-NMD Conference

As part of the care session in the TREAT-NMD conference Teresinha Evangelista talked about how our ERN can help develop and implement care guidelines for neuromuscular diseases. After a quick overview, Teresinha looked at how the ERN reduces geographic barriers and reduces unnecessary travel. Teresinha also presented the EURO-NMD plans for the guidelines which includes…


Best wishes for Christmas and the New Year


We would like to take this opportunity to wish you all a very Happy Christmas. We would also like to say a very big 'Thank you' to all of our healthcare providers who have been hugely instrumental in getting our network up and running.

We really enjoyed meeting many of you in Freiburg and look forward to working with you in 2018 to develop our network further and begin to make a real difference in patients' lives.

All the very best for the coming New Year,

Katie, Teresinha, Becca, Joanna and Michael