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…
We are delighted to report that the MSA-WG has just published their Patient Pathway on Vascular Ehlers-Danlos syndrome! Patient Pathways aim to improve the care and management of patients with a rare disease. They include the “red flags” that may lead to the suspicion of the disease, how to reach…
We are very proud to present the VASCERN Do’s and Don’ts Factsheets for Rare Vascular Disease Patients Facing Frequent Situations. These factsheets were developped in order to assist patients and the medical community in knowing the basic do’s and don’ts of common and emergency situations (e.g. delivery, anaesthesia, stroke, surgery) that need…
VASCERN Spotlights: Professor Leo Schultze Kool VASCERN has had a great start in its first year and I really hope that we can continue the progress and keep the enthusiasm alive. We have a lot of things to do and we can really improve the quality of treatment and care…
