Date: March 24–25, 2025
Location: AP-HP Hôpital Bicêtre, Paris, France

Introduction

The 9th Annual ERN-LUNG Board Meeting was held at the historic Hôpital Bicêtre in Paris. The meeting brought together representatives from all core networks, functional committees, patient organizations, and partner institutions to review current projects, share updates, and discuss future strategies.

Prof. Marc Humbert opened the event by sharing the rich history of the hospital. He highlighted its past as a place of medical and social reform, including a powerful story about one of the first doctors who advocated for unchaining mentally ill patients, symbolizing a major shift in care philosophy. He also noted that the guillotine was tested at the hospital before the French Revolution…

My Contribution

During the ePAG report session, I had the opportunity to present our Bel Air Center, a virtual conference and collaboration space for patients and professionals. The audience responded very positively, expressing interest and enthusiasm about the features and potential applications of our platform. Several participants approached me afterward to learn more.
Key Topics and Takeaways

Plenary Presentations & Network Updates

ERN-LUNG Report & Strategy

• Focus on improving access to high-quality diagnosis and care.
• Ongoing 5-year evaluation of the network.
• Strategy Working Group presented updates, including the JARDIN project under EU4Health Programme.

Registries and Biobanks

• Presented by Olivier Sitbon.
• Updates on the ERN PRIME registry and BREATHeREGISTRY.

Patient-Reported Outcomes (PROs) and Quality of Life (QoL)

• Simon Gibbs discussed plans to develop disease-specific PROs across all ERN-LUNG disease areas by 2025.

CPMS 2.0 Platform

• New streamlined version reduces data input for case discussions.
• Allows multiple patients in one session and invitations to members from other ERNs.

Cross-Border Care

• Presented by Gergely Meszaros with slides prepared by him and Prof. Adam Torbicki. In addition Gergely gave information about the work to include more hospitals and HCPs from eastern Europe in ERN-LUNG

ERN-LUNG Academy & Education

• 56 participants in 2025, including some self-funded from non-EU countries.
• 44 redesigned modules available; EU-requested final exam in 2026.

Quality Management & Best Practices

• LUNG-MAP tool used to monitor activity and performance.
• Identification of strengths and weaknesses across the network.

French Rare Disease Plan

• Presented by Agnès Linglart (ENDO-ERN).
• Aimed at supporting diagnosis, access to care, and databank development.
• This national plan had many similarities to ERN-LUNG

Parallel Meeting: PH Core Network

Clinical Research Collaborations (CRCs)

• Walk-through of CRC PHAROS and CRC PEX-NET. (The latter will be presented by Professor Gabor Kovacs at an upcoming ELF PH ePAG event that PHA Europe will participate in. It’s related to exercised induced PH.)

PROMS and Registries

• Prof. Olivier Sitbon has now used EmPHasis-10 with nearly 1500 patients.
• Plans to develop a clinical trial network within ERN-LUNG PH.

Educational Resources

• Links to PH-related YouTube courses will be made available to selected patient representatives by Elisabeth Humbert-Dorfmüller.

Guidelines & Statements

• Discussion on some conclusions from last year’s WPHS in Barcelona and how this might influence the guideline.

Conclusion

The ERN-LUNG Annual Board Meeting was an inspiring and productive event. It provided an excellent opportunity to share updates from our patient community, learn about ongoing and future initiatives, and connect with experts and stakeholders from across Europe. I am confident that our continued engagement will help strengthen patient-centered care and collaboration across the network.

Hall Skaara
Project Manager PHA Europe
March 31st, 2025