The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU countries. 24 ERNs are working on a range of thematic issues, including ERN Lung, which includes a core network on pulmonary hypertension, led by Prof. Marc Humbert.
A recent article published on the EURORDIS website reports on the Conference on Rare Diseases and the European Reference Networks held on 10-11 October 2023 in Bilbao, Spain. The conference had over 550 participants, including clinicians, researchers, patients and European Union Commissioner Stella Kyriakides and Donata Meroni of Directorate General SANTE (Public Health). Meroni has been overseeing the Commission’s five-year evaluation of the ERNs and reported that all 24 ERNs received a positive evaluation, a source of pride for the Commission. In the past six years, ERN experts have conducted more than 3,450 virtual cross-border consultations for diagnosis, treatment, and disease management. Interesting examples are provided in the article.
The article also mentions the January 2022 European Commission “Joint Action on Integration” (JARDIN), that aims to embed the ERNs into national health systems. This will require the establishment of national reference networks, or other national structures like ERN National Coordination Hubs, that can themselves be plugged into the European networks. To be followed!
Read the EURORDIS article at this link