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.
The European Patient Advocacy Groups (ePAGs) represent the patient voice in the European Reference Networks (ERNs) (see above). Two pulmonary hypertension advocates are members of the ePAG for ERNLung: Luc Matthysen, HTAP Belgique, and Gergely Meszaros, PHA Europe