Newsletter - Wednesday 2nd August 2017

A warm welcome to ERN EURO-NMD and our newsletter


The start of our European Reference Network is a real moment to celebrate! Years of preparation, discussion and planning have gone into the initiation of European Reference Networks for Rare Diseases, and it has been a pleasure to have been involved in this process. For patients with rare diseases, this moment offers the potential to envisage an organized and cohesive approach to care across Europe on an unprecedented scale. Access to expert opinions and diagnosis, research opportunities, and enhanced learning options should really address the aim of ERNs to spread expertise and improve the patient experience.

However, these changes will not happen overnight and they will not happen without the will to work in a new and collaborative manner, sharing guidelines, offering expertise and being open to sharing data and changing some of the ways we approach research and care. To date funding opportunities are limited, so we are relying on goodwill and enthusiasm to drive the changes in our way of working, reassured that there are initiatives in the pipeline which will open funding options to support the onward development of the ERNs.

Our current priorities are to get communication structures up and running, to ensure that people are represented across the network according to their expertise and that everyone’s voice is heard. Our meeting in Freiburg in November will be our first opportunity for us all to meet together and we are very much looking forward to that.

In the meantime, we are excited to hear your thoughts, plans and views.

Please visit our contact page of the website to get in touch.


Save the date - 29-30 November

Save the date for our meeting in Freiburg! We're currently developing an exciting programme for this our first face to face meeting. This will be an excellent opportunity for all attendees to forge those all important new network relationships during the first year of the network's operation. Healthcare providers will get the chance to promote their work, an interactive case study session is being planned as are ePoster sessions and more.

All of this will take place 29-30 November in the Historic Merchants' House in the beautiful centre of town.

So.....will we be seeing you in Freiburg?


3rd conference on European Reference Networks - a report


The 3rd official European Reference Network (ERN) conference took place in Vilnius, Lithuania, on the 9th of March. The event was well attended by around 600 healthcare providers, patient representatives, policy makers and health experts. The conference was an initiative of the European Commission, and was hosted by the Ministry of Health of Lithuania under the auspices of the Maltese Presidency of the Council of the EU.

The conference started with an opening video message of President of the European Commission Jean-Claude Junker, and political statements of the Commissioner on Health and Food Safety Vytenis Andriukaitis and the Ministers of Health of Lithuania (Aurelijus Veryga) and Malta (Christopher Fearne). Members of the European Parliament Françoise Grosstête and Bryan Hayes participated trough a video message as well.

The conference included four roundtables, addressing the following topics: organisation and management of ERNs; EU policies and supporting actions to ERNs; ERNs and national healthcare systems; and the way forward for the new ERNs.

The conference was concluded by a ceremony where Commissioner Andriukaitis officially awarded certificates to the 24 ERN Coordinators. They represented almost a thousand of multidisciplinary medical teams of more than 300 hospitals, located in 25 EU Member States and Norway.

Conference programme, posters, presentations, videos and more are all available on the European Commission website.


EURO-NMD Collaborative Platform

The first version of our collaborative platform is now live and those of you who are directly connected with the project are asked to visit the platform and ensure you have create an account so that you will be able to access documents, calendars, forums etc.

We envisage that this area will, over time, become the main communication portal for the network allowing us all to get 'up to speed' at any given time about various aspects of the network.

Update on Clinical Patient Management System

The Clinical Patient Management System (CPMS) is where clinical staff will share their expertise and knowledge in a secure, dynamic collaborative environment.

Currently the initial version of the system is still in its testing stage with a small number of selected healthcare providers working through it in a simulation of real-world scenarios.

A short overview video of the system is now available via our website.


European Academy of Neurology interviews Mary Reilly


The European Academy of Neurology (EAN) website features an interview with Mary Reilly who is President of the Peripheral Nerve Society (PNS) and one of our Executive Committee members. In the interview, Mary touches upon the exciting developments around inflammatory neuropathies and inherited neuropathies, PNS 2017 conference and also our ERN network.


Are there any upcoming conferences that we need to know about?


We have been busy building the foundations of our forward-facing network website as part of this process we have included an events section which we would like your help with.

We have populated this with meetings and events that we readily know about however we suspect there will be others that you think need to be included.

From past experience in other projects we have found that a well populated comprehensive calendar of events to be extremely useful and indeed popular when planning activities. 

Please visit our events section and let us know about any upcoming events that you think we should include by completing the online form.


Let's stay in touch


We really want to spread the word about our ERN and share information, news, events and more with as many people as possible. With this in mind, we would ask you to forward this newsletter on to your colleagues and contacts. If you haven't received this newsletter directly from us, why not subscribe yourself to ensure you never miss copy?

In addition to our newsletter we have an active Twitter account which you might want to follow to find out up to the minute information about what we're up to, who we are meeting and latest news. You can find us at @euro_nmd