Following an election process organised by Eurordis this summer, Juergen GRUNERT was appointed as the new Chair of the VASCERN European Patient Advocacy Group (ePAG). Juergen Grunert is already the ePAG Co-Chair for the MSA-WG and is equally Chairman of the Deutsche Ehlers-Danlos-Initiative e.V., the oldest patient organization in Germany. …
The Hereditary Haemorrhagic Telangiectasia (HHT) Patient Pathway is now available in French! Developped by the VASCERN HHT-WG, this document was kindly translated by the The French Network for Rare Multisystemic Vascular Diseases (FAVA-Multi). Patient Pathways aim to improve the care and management of patients with a rare disease. They are …
EpiCare and ERKNet have joined forces to create a cross-ERN e-histopathology task force! This new task force aims to create a digital pathology database in order to tackle rare diseases. ERN partners engaged in the histopathology (and tissue-based molecular-genetic) work-up of rare diseases are encouraged to join! The first web-conference …
The much loved ERN presentation video clip and the ERN video reportages, produced in 2017, are now finally available in all European languages! The ERN presentation video clip is available in two formats: dubbed version in all EU languages + Norwegian dubbed and subtitled version in all EU languages + …
A new scientific publication entitled Clinical Validity of Genes for Heritable Thoracic Aortic Aneurysm and Dissection, co-authored by several VASCERN HCP representatives including Prof Julie De Backer (Chair of the HTAD-WG), Prof Catherine Boileau (HTAD-WG member), Dr Leema Robert (Chair of the MSA-WG) and Prof Bart Loeys (member of the HTAD and …
VASCERN Spotlights: Professor Julie De Backer The ultimate goal is to provide patients with these rare diseases with the right care in a timely manner – my greatest hope, therefore, is that the central ERN message “Share – Care – Cure” will become “Excellent Sharing – Excellent Caring – Excellent …
The European Commission and the Innovation and Networks Executive Agency have launched the 2018 Connecting Europe Facility Telecom Call for proposals, on June 28th. This call aims to support the deployment of European Digital Service Infrastructures (DSIs), including, for the European Reference Networks on Rare Diseases: eHealth – improve cross-border healthcare access and …
The VASCERN coordination team, located in Paris, France, is looking for a full-time administrative assistant! The ideal candidate must be bilingual in both French and English. Read the full job description (in French) here! If you or someone you know is interested in joining us and being involved in the exciting project …
The Clinical Patient Management System (CPMS) is slowly being implemented in the various VASCERN Rare Disease Working Groups (RDWGs). So far, we have 50 registered users in the CPMS, 38 of which are active, and we have opened 6 panels where patient cases are being discussed between our experts. Several …
We are currently adding subtitles to our Pills of Knowledge (PoK) Videos! We hope that by adding subtitles in the various languages of our ERN members, this will allow more people to be able to understand the valuable information in these short videos and therefore reach a wider public across Europe. …