Quality of care for rare diseases in Europe
IDOM, together with the Andalusian Health Quality Agency (ACSA), is leading the project of analysis and evaluation of the European Reference Networks for the care of rare diseases (ERNs), an initiative of the European Commission that includes more than 24 networks and 834 clinical units distributed in 261 hospitals in the Member States.
More than 30 million people suffer from a rare disease in the European Union, so support for research into this type of condition is key to the development of appropriate treatments, protocols and facilitating the living conditions of patients.
The European Reference Networks for the care of rare diseases (ERNs) are structures framed within the European Union (EU) Directive on patients’ rights in cross-border care and are aimed at research, the exchange of knowledge and the coordination of care for rare diseases in citizens of different member countries, guaranteeing the availability of the necessary treatments regardless of the patient’s origin.
At the project kick-off briefing, representatives of the Commission’s Directorate General for Health and Food Safety (DG SANTE) and the European Health and Digital Executive Agency (HaDEA), as well as the consortium led by IDOM, presented the methodology and work schedule, as well as the main milestones to the more than 600 representatives of clinical units and hospitals who attended the event virtually.
