On 23–24 March 2026, the Alliance for Pulmonary Hypertension attended the Annual Board meeting of ERN-LUNG, the European Reference Network for Rare Respiratory Diseases, in Paris. The Alliance was represented by Louise Bouman, Board member of the organisation and member of the ERN-LUNG E-PAG (European Patient Advisory Group). The meeting brought together healthcare professionals, researchers, and patient representatives from across Europe to share experiences, discuss current challenges, and set joint priorities for the care of people living with rare respiratory diseases. Louise’s participation highlights the Alliance’s commitment to active patient involvement in European collaborations and decision-making.
The Annual Board Meeting provided the opportunity to review the past year, discuss ongoing projects, and plan new initiatives to further improve care and collaboration. For patients, this translates into:
* Faster and more accurate diagnosis
* Access to specialist knowledge across borders
* A stronger role for patients in care and research
* Further development of European registries and studies
* Increased opportunities for education and knowledge sharing
During the meeting Louise Bouman was invited to briefly introduce the Pulmonary Hypertension Expert Patient Academy (PHEPA), a joint initiative of the Alliance for Pulmonary Hypertension and PHA Europe, officially endorsed by ERN-LUNG, designed to provide disease-specific training for pulmonary hypertension patients/patient advocates. While PHEPA remains independent from ERN-LUNG activities, the initiative aligns with the broader goal of strengthening the role of well-informed and trained patients in research, care development, and policy.
The Alliance for Pulmonary Hypertension looks back on a valuable and constructive meeting and remains committed to fostering strong European collaboration, with the voice of people living with pulmonary hypertension at the center.
Photos: from left: Prof. Adam Torbicki and Hall Skaara, Louise Bouman presenting the PHEPA, Louise Bouman with Hall Skaara and Gergely Meszaros, Louise Bouman with Hall Skaara and Prof. Marc Humbert.
