Category Archives: News
The European Commission’s EU Protects campaign (#EUProtects) aims to raise awareness of the various ways in which the EU combats global challenges to protect its citizens and their latest video features the European Reference Networks (ERNs)! Link to the video here The video features the story of Onni, a Finnish …
The European Commission has just released a new flyer and video about the European Reference Networks aimed at informing patients and healthcare professionals about how the ERNs work. It introduces how the 24 ERNs convene virtual panels of experts in rare diseases in order to discuss complex clinical cases. This …
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 …
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 …