Wednesday special programme at ERS Congress 2026

09:00-11:00 CEST 

This session will explore how patients can benefit from ERN-Lung, a European network of specialist healthcare centres and patient organisations working together to improve care, research and support for people living with rare lung conditions. Patients are involved throughout the network’s work, helping to shape research, clinical guidelines, registries and support services. 

Discussions will cover genomic diagnostics and counselling, patient registries, patient-reported outcomes and the role of patient organisations in research and clinical guidelines. The session will include perspectives from Liam Galvin, Chair of the ELF Patient Advisory Committee, and Hal Skaara, member of the ELF Pulmonary Hypertension Patient Advisory Group. 

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09:00-10:30 CEST 

Planned by the ELF Youth Group, this session will spotlight how young people are shaping lung health advocacy, education and policy. Introduced by Ed Powell, Chair of the ELF Youth Group, it will feature contributions from Elena Martí Barclay, Marlene Sorensen and Maksim Mironovas, who will share their experiences of advocating for clean air, better health and greater youth involvement in decision-making. 

The programme will highlight successful youth-led initiatives, including Project Zero in Spain and the work of Bite Back, a youth movement tackling junk food marketing. Carlos Navarrete will also share insights on working with young people to inspire healthy behaviours. The session will conclude with a discussion on the future of the ELF Youth Group and opportunities for young people to contribute to lung health projects and policy development. 

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10:30-12:30 CEST 

Early detection in lung health means identifying signs of lung conditions before symptoms become more serious. This session will explore approaches to early detection, including health screening and the earlier diagnosis of lung conditions in children. 

Incoming ELF Chair Phil Taverner will join speakers to discuss how screening, prevention and earlier diagnosis could help improve lung health across Europe. The session will also include updates from the LungHealth4Life project and explore the future of lung cancer screening and early detection across Europe. 

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11:15-12:45 CEST 

Chaired by outgoing ELF Chair Dimitris Kontopidis, this session will explore the progress made during his lung transplantation campaign and why he chose transplantation as a priority during his term as Chair. 

Through a discussion featuring patients and healthcare professionals, participants will examine challenges and solutions in lung transplantation from both perspectives. Alongside Dimitris, speakers include Natalia Maeva, member of the ELF Council and ELF Patient Advisory Committee, and Stefano Pavanello, member of the ELF Patient Advisory Committee. 

The session will conclude by looking ahead to future priorities and opportunities to improve care, communication and outcomes throughout the transplant journey. 

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