On March 20-21, 2017, a conference was held for the EU Malta Presidency. In this conference, a session took place on integration of healthcare and research on rare diseases. The ultimate goal of this session was to establish a long-awaited single pipeline covering research, tools and clinics leading to optimization and exploitation of results (and means), faster drug discovery and improved patients’ care for rare diseases.
TSC Chair Diego Ardigò presented on behalf of IRDiRC, in a part of the session that was dedicated to presenting different research collaboration initiatives in the current rare diseases landscape. Other initatives that were presented were RD-ACTION, Orphanet, BBMRI-ERIC, E-RARE, European Commission Directorate General Joint Research Center and the National Center for Rare Diseases of Instituto Superiore di Sanità (ISS), Italy.
At the second day of the conference saw a session dedicated to development and access to medicines. This session was dedicated to promote structured European collaboration on rare diseases and also to promote structured European collaboration on joint procurement and access to medicines.