The following report is a comprehensive evaluation of European Reference Networks (ERNs) and its
members, the Healthcare Providers (HCPs), across Europe, focusing on their role in addressing complex
and rare conditions. 24 ERNs and 836 HCPs from 24 EU Member States and Norway participated in the
evaluation. The evaluation included self-evaluations, document reviews, ERN interviews, on-site HCP
audits and stakeholder interviews.
The results showed a high level of commitment of ERNs to their objectives, with a significant
proportion, 100% of ERNs and 89.7% of their members, achieving satisfactory results in the evaluation.
Strengths were identified in the areas of Education and Training, Networks and Dissemination,
Competence, Experience, and Patient-centred care, while Quality and Patient Safety, and Organization
and Management are areas for improvement for both, ERNs, and HCPs respectively.
This report, drawing on a wide range of data, increases the understanding of the essential role of the
ERN system in addressing rare diseases and conditions across Europe. It also presents relevant
information on the structure, maturity, activity, and impact of the ERN system, and identifies
opportunities for improvement based on the findings of the stakeholder interviews and the evaluation
to further enhance the evaluation process and ensure the continued sustainability of the ERN system.
The information and views set out in this report are those of the Independent Evaluation Body and do
not necessarily reflect the official opinion of the Commission/Executive Agency.
