The annual Board meeting of the ERN-LUNG – European Reference Network for rare respiratory diseases, took place in Paris on March 24-25, 2025, with over 100 participants, not only from the EU but also UK, US and Canada.
Two European patient representatives, Pisana Ferrari and Hall Skaara, (2nd and 3rd from left in the cover photo) took part in the pulmonary hypertension core network meeting on the second day. This provided the opportunity to discuss the pulmonary hypertension core network’s past activities and future plans.
These include:
- The development of new position statements and clinical guidelines (e.g. on treatments for pulmonary arterial hypertension);
- Ongoing clinical research collaboration efforts;
- The PHAROS (severe Pulmonary Hypertension mAnagement acROSs Europe) project;
- The ERN-LUNG goes East program, a patient-led initiative by ERN Lung to raise awareness about ERNs among health professionals in Eastern Europe, aiming to engage them actively in the Networks.
Congratulations to Prof. Marc Humbert for his great leadership of this network, to the ERN-LUNG project manager Gergely Meszaros JD, MSc, and to all those who contributed to the organisation of the meeting and success of the network.
The patient representatives from the ERN core networks gathered for a group photo, representing sarcoidosis, pulmonary hypertension, cystic fibrosis, Alpha-1-antitrypsin deficiency, bronchiecstasies, mesothelioma, primary ciliary dyskinesia, interstitial lung diseases. Hall is 4th from left, Pisana first on the right.
