Newsletter #23 - October 2018
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VASCERN Days 2018: Highlights from our 2nd Annual Seminar!
[vc_row][vc_column][vc_column_text]VASCERN's second annual seminar, VASCERN Days 2018, took place on October 11-12th, 2018 in Paris, France! In attendance were 70 healthcare professionals from all of our 31 Healthcare Provider Members as well as European Patient Advocacy… |
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VASCERN Representation in the interERN WG on Research
VASCERN continues to expand its participation in the interERN Working Groups (WGs)! We are happy to announce that our representatives in the new interERN and Board of Member States (BoMS) integrated… |
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VASCERN Spotlights: Professor Claire Shovlin
VASCERN Spotlights: Professor Claire Shovlin I hope that across the diseases that VASCERN champions, the wisdom, dedication and experience of the medical doctors can be channeled into further, genuine healthcare… |
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#ProtectERNs Campaign!
With the UK set to leave the European Union (EU) on March 29th 2019 (followed by a proposed 2 year transitional period), much is still unclear when it comes to the… |
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Focus on the ERNs in the Health-EU newsletter!
An interview with the Chair of the ERN Coordinators, Dr Franz Schaefer (from Heidelberg University), appears in this month's Health-EU newsletter! In this article Dr Schaefer describes how the ERNs currently… |
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First Central-Eastern European Marfan Symposium
The first Central-Eastern European Marfan Symposium took place on Friday October 26th, 2018 in Budapest, Hungary. This symposium, focused on Marfan syndrome, was organised by two members of VASCERN's Heritable Thoracic Aortic… |
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Rare Disease Day 2019 theme announced!
The theme for Rare Disease Day 2019 was announced this month and it is a very important one for the rare disease community: Bridging health and social care! "The 12th edition… |
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State of the Art of Rare Disease Activities in Europe 2018
A 2018 Overview Report on the State of the Art of Rare Disease Activities in Europe has been published by RD-Action, the recently-concluded European Joint Action for Rare Diseases. This comprehensive report gives a… |
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VASCERN DAYS 2018 is almost here!
The much anticipated event is almost here: VASCERN Days 2018 will take place next week, from October 11-12, 2018, in Paris, France! VASCERN's second annual seminar will be a chance… |
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Slides and recordings from webinars for the ERNs now available!
The slides and recording from the webinars for ERNs, organised by RD-Connect together with ERN EURO-NMD, are now available! The three webinars that took place in September, 2018 were the following:… |
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Tue13Nov2018
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Tue13Nov201817:00PM-18:00PM (CET)Videoconference call - Webex
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Wed14Nov2018
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Mon19Nov2018
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Tue20Nov201814:00PM-18:30PM (CET)Brussels, Belgium
The 6th ERN Coordinators Group (ERN-CG) Meeting will take place on November 20th, 2018 in Brussels, Belgium.
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Wed21Nov2018Thu22Nov2018Brussels, Belgium
The 4th Conference of the European Reference Networks (ERNs) entitled "ERNs in action" will take place in Brussels, Belgium from November 21-22, 2018.
The objectives of this year's conference will be to:
- Mark that ERNs are entering the next stage of their lifecycle: the deployment phase.
- Present the main clinical and organisational outcomes and success stories of the networks and consider the lessons learned.
- Identify the main challenges, potential improvements and opportunities for the functioning and management of the networks and the way forward for the future of the ERN system
VASCERN members who will be at this event include: our Coordinator, Prof. Guillaume Jondeau (who will Co-lead parallel session 6), Prof. Leo Schultze Kool (VASCERN Registry WG Chair and VASCERN VASCA-WG Co-Chair), Prof. Claire Shovlin (VASCERN HHT-WG Chair), Prof. Julie De Backer (VASCERN HTAD-WG Chair), Dr Leema Robert (VASCERN MSA-WG Chair), Prof. Robert Damstra (VASCERN PPL-WG Chair, parallel session 6 speaker), Prof. Miikka Vikkula (VASCERN VASCA-WG Chair), Dr Alessandro Pini (eHealth & Training / Education WG Chair), Romain Alderweireldt (VASCERN Ethical and Legal WG Chair (interERN WG)), Juergen Grunert (VASCERN ePAG Chair) and Natascha Assies (VASCERN ePAG co-chair for PPL and parallel session 6 speaker). VASCERN Coordination team members Marine Hurard (Project Manager) and Natasha Barr (Project Officer) will equally be in attendance.
Prof Guillaume Jondeau will co-lead the parallel session 6 entitled Patient's representatives and Healthcare providers partnerships where Prof Robert Damstra and Natascha Assies will present An Overview of Pediatric and Primary Lymphedema, the Pill of Knowledge (PoK) that was created thanks to the cooperation between patient advocates and healthcare professionals.
Further details TBA.
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Wed21Nov2018
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Mon26Nov2018
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Thu21Feb2019Fri22Feb2019Leuven, Belgium
The Pediatric and Primary lymphedema Working Group (PPL-WG) will have its face-to-face meeting in Leuven, Belgium from February 21-22nd, 2018.
This two-day meeting will be organised and hosted by Dr. Sarah Thomis, HCP Representative from the University Hospitals Leuven.
It will be the PPL-WG's second face-to-face meeting, after VASCERN Days 2018, for this second year of activity.
For a reminder, the other 4 Rare Disease Working Groups (HHT, HTAD, MSA and VASCA) all held their individual face-to-face meetings in May of this year.
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Thu13Jun2019Sat15Jun2019Chicago, USA
The 9th International Conference of the International Lymphoedema Framework (ILF) will take place from June 13-15th, 2019 in Chicago, USA.
VASCERN PPL-WG member, Dr Kristiana Gordon, is already a confirmed to speak at this event.
For more information, click here
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Thu22Nov2018
