The VASCERN European Reference Network: An overview

Established since 2017 and co-funded by the European commission, VASCERN is the European Reference Network aiming at improving and homogenizing care of patients with rare multisystemic vascular diseases throughout Europe. It gathers 31 expert teams from 26 highly specialized multidisciplinary HCPs, plus 7 Affiliated Partner centers, from 16 EU Member States, as well as more than 65 patient organisations (ePAG). It is structured around 5 main RDWGs, each specialized in a specific disease or group of diseases. It produces resources for doctors or patients in English, which are translated and used across Europe and the world. These resources include educational videos, guidelines, clinical outcome measures and expert consensus statements. Communication through VASCERN's social media channels and website ensure these valuable documents and media are shared across the EU and beyond. VASCERN's activities are enabled by the use of eHealth tools like the CPMS (Clinical Patient Management System), to discuss complex cases, and WebEx, for videoconferences. VASCERN also develops its own registry of rare vascular diseases, as well as a Mobile Application referencing all the expert centers and patient organisations in Europe to facilitate patient access to optimal care. Finally, VASCERN is coordinated at the Hopital Bichat-Claude Bernard in Paris by a team of 5, responsible for the organizational, technical, communication, administrative and budgetary tasks of the project. This review focuses on the notable achievements made in the first four years of the network and the challenges it still faces.