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 WG on Research will be: HHT-WG Chair, Professor Claire Shovlin (Hammersmith Hospital, Imperial College Healthcare NHS Trust, London, UK) and VASCA-WG…
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 improvements for patients and their families. It is with great pleasure that we present this month’s member in the VASCERN…
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 future participation of the UK in the European Reference Networks on rare diseases. Genetic Alliance UK has developed a statement, in…
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 work and how involvement from local, regional and national healthcare providers, with the help of patient organisations, is so important…
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 Working Group (HTAD-WG), Prof. Zoltán Szabolcs and Dr Kálmán Benke (with fellow members of the Hungarian Marfan Foundation), from the…
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 of Rare Disease Day will focus on bridging the gaps in the coordination between medical, social and support services in…
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 complete overview of the past, current and future rare disease activities in Europe, as well as the political framework in…
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 for all of our members to meet face to face and reflect on all of the hard work that has been…
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: Genomic analysis quick and easy: RD-Connect Genome-Phenome Analysis Platform (06/09/2018) Finding registries and biosamples in just a few clicks: RD-Connect…