eHealth for patients with rare diseases: the eHealth Working Group of the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN)

摘要

VASCERN structure in the first two years of the ERN lifetime. VASCERN is organized into: five interconnected RDWGs (Rare Diseases Working Groups), the European Patient Advocacy Group (ePAG) at the centre of the ERN, and three transversal WGs: ethics, registry, and eHealth and the Communication Advisory Task Force, managed by the VASCERN coordination team. The figure also summarizes the main actions of the eHealth WG in collaboration with the coordination team and the ERN as a whole: development of a mobile app and development of pills of knowledge (PoK) delivered via digital media