What is an ERN?
ERN stands for European Reference Networks; they were launched by the European Commission in 2017. These are virtual centers established to represent patients with rare and complex diseases. It involves healthcare providers from across Europe, who discuss complex cases via a dedicated online platform called CPMS.
The aim is to tackle complex or rare diseases and conditions that require highly specialised treatment by concentrating the necessary knowledge and resources.
EURORDIS, a non-governmental patient-driven alliance, played a crucial role in the formation and development of the European Reference Networks. It continues to be involved in the ongoing operation, particularly by ensuring that patients are adequately represented within the networks.
Find out more about ERNs here.
European Patient Advocacy Groups (ePAG)
The European Organisation for Rare Diseases – EURORDIS – initiated a European Patient Advocacy Group (ePAGs) for each ERN. ePAGs bring together rare disease patient advocates who are actively involved in the work of the European Reference Networks. Each ePAG corresponds to the scope of one of the 24 ERNs, aligning patient organisations and clinicians, experts and researchers working on the same rare or complex disease or highly specialised intervention.
RIPAG is the European Patient Advocacy Group (ePAG) for the ERN-RITA.