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Newsletter - December 2019 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
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At this time of year when one year draws to a close and another is about to begin we often take a moment to reflect on what has been achieved in the past year.
For EURO-NMD, 2019 has been a year of change and collaboration.
In early 2019 the network coordination office officially moved from the Newcastle, UK to the Institute of Myology in Paris effectively mirroring the move made by our network coordinator Dr Teresinha Evangelista a few months before.
The relocation resulted in Heike Pascal and Annelies Hermann taking up the roles of Project Manager and Project Assistant respectively. Together with some of the staff still based in Newcastle, Michael Hails and Chloe Blewitt, they have ensured the transfer to Paris has been as smooth as possible which enabled us to deliver a wide range of activities on behalf of the network.
This year there have been nine educational webinars which were organised and delivered in conjunction with ERN-RND. Ranging from ‘Diagnostic Imaging in NMD’ to the ‘Classification of Inflammatory Myopathies’ these webinars have been well received and recordings are available on our website for visitors to watch at their convenience.
Our second Summer School on Translational Research was a joint venture between our network and TREAT-NMD. The Summer School was held in Leiden, Netherlands and was well attended and received. We are looking forward to the 2020 Summer School which will held again in Leiden, 6-10 July. We expect to be taking applications early in the new year.
We were delighted with the response to our first bursary scheme. The network’s Executive Committee are currently looking at all of the applications and will decide on who is successful. We will of course, keep you informed about our bursary scheme in both our newsletter and on our Twitter feed.
Our network had a presence at the European Academy of Neurology (EAN) and Myology meetings where delegates could find out more about our network in general and the Clinical Patience Management System more specifically. In May we established a memorandum of understanding with the EAN and we are currently planning our presence at their 6th annual congress in Paris.
Our annual meeting in Ferrara was the biggest and most successful yet and we were delighted to welcome Victor Dubowitz amongst many others to Italy. Victor delivered the opening presentation which was called Ramblings in Myology: My First 60 years which concluded in a standing ovation. We are pleased to announce that preparations are well underway for our 4th annual meeting which will take place in Budapest, Hungary, 18-20 November.
In 2019 the number of people who regularly receive our newsletter has steadily grown and is fast approaching 500 subscribers. We would like to take this opportunity to thank all of those how have contributed throughout the year with a special thanks to our Patient Advisory Board for their help. We have also seen generally 37% more traffic to our website in 2019 compared to the same period in 2018.
In October 2019 we applied for the ERN Registries Grant. We will of course keep everyone up to date as to the outcome just as soon as we hear anything.
We are also in the process of welcoming 31 healthcare providers plus 12 new affiliated partners to our network which we find particularly exciting. We anticipate that the inclusion of these additional healthcare providers will further help our reach across European Member States to help those in need. We hope that they will maximise the benefits that being part of our network provides by becoming actively involved in various research such as the EJP-RD and SOLVE-RD. As their information become available we will be adding their details to the website and we look forward to meeting them and many others at various times and places throughout 2020.
All that remains is to say a very big thank you to you all for being part of our network. From the whole coordination team, we hope you all have wonderful time over the Christmas break. We look forward to working with you and meeting up with many of you in 2020!
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Statement on the Integration of the ERNs to the Member States healthcare systems
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This Statement by the ERN's Board of Member States aims to support Member States in the process of integrating ERNs into their healthcare systems, allowing patients with rare and low prevalence complex diseases to reap all the benefits of the networks.
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A report from November's Coordinators' Meeting
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The Coordinators of the 24 ERNs and the European Commission met for three days in Brussels, from the 13-15 November, to address several aspects related to the consolidation of their networks, the expansion of their geographical coverage and areas of intervention, and deepening of several areas of action.
Discussions were around the expansion of the Networks, areas of competences and actions and the results from a survey conducted amongst ERN members by the European Joint programme on rare diseases.
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Rare2030: Experts meet to imagine the future of rare diseases
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On 7th October a multi-stakeholder group of over 100 experts from the rare disease field met in Brussels in the scope of the 2-year Rare 2030 project.
This EU Pilot Project, commissioned by the European Parliament and coordinated by EURORDIS started in January 2019, and is aimed at guiding a reflection on rare disease policy in Europe through the next ten years and beyond.
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Results of EJP RD Joint Transnational Call (JTC2019)
In December 2018 the EJP RD launched its first Joint Transnational Call (JTC2019) co-funded with the European Commission to fund multilateral “Research projects to accelerate diagnosis and/or explore disease progression and mechanisms of rare diseases”.
The evaluation process was completed and resulted in success for 22 consortia and 17 patient advocacy organizations spanning 26 different countries.
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Joint Transnational Call 2020 (JTC2020)
Pre-announcement of the EJP RD Joint Transnational Call (JTC) 2020 fostering development of new therapies for rare diseases.
The call launch is currently expected to be 18th December, we recommend visiting the EJP website to findout the very latest information.
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Submit a photo to enter the EURORDIS Photo Award 2020!
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The EURORDIS Photo Award is one of the 14 Black Pearl Awards that recognise the stars of the rare disease community. Have you taken a great photo that illustrates the challenges or joy of living with a rare disease?
Closing date for entries is 16 January 2020!
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Best wishes, see you all in 2020!
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