The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex on 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.
The European Patient Advocacy Groups (ePAGs) represent the patient voice in the European Reference Networks (ERNs) (see above). Five pulmonary hypertension advocates are members of the ePAG for ERN Lung: Luc Matthysen, HTAP Belgique, Gergely Meszaros, PHA Hungary, Pisana Ferrari, Alliance for Pulmonary Hypertension, Natalia Maeva, and Hall Skaara, PHA Europe.
You can find a list of the organisations represented on the ERN Lung at this link on the ERN Lung website, and the map of the reference centers included here