On 11–12 June 2025, the European Respiratory Society (ERS) hosted its annual Presidential Summit, this year focused on “Prevention: Improving Respiratory Health in Europe” in Dublin, Ireland. The event brought together stakeholders from research, healthcare, patient advocacy and policy to explore prevention strategies for long-term lung conditions, referred to as chronic respiratory disease (CRD).
One of the standout moments of the Summit came in Session 3: Lived experience and pragmatic solutions, co-chaired by Helen Parks, ELF Council member and Chair of the ELF United Patient Advisory Group (UPAG) and Professor Hilary Pinnock, ERS Education Council Chair.
The session opened with a powerful video featuring people from across Europe sharing their personal experiences of living with lung conditions, bringing the realities of chronic respiratory disease into focus for all attending.
The session included patient advocates, clinicians and policymakers and reinforced the importance of practical, patient-informed approaches to prevention and care.
Helen said:
“Prevention can only work if we listen to the real experiences of people living with lung conditions. Listening to those experiences is the key to creating practical solutions that can stop illness before it starts.”
Liam Galvin, ELF Patient Advisory Committee Chair and CEO of EU-PFF talked about the role of patient organisations and the support they give to people with CRDs. Hall Skaara from PHA Europe also presented.
Another key milestone at the Summit was the launch of a joint report from the World Health Organization (WHO) and ERS: “Chronic Respiratory Diseases in the WHO European Region: Towards Health Equity in 2050.” The report outlines the scale of CRDs in Europe, affecting more than 81.7 million people, many of whom remain undiagnosed. It highlights tobacco use and air pollution as major, preventable risk factors and points to systemic challenges including limited diagnostic tools, insufficient healthcare training and delays in referral.
The report recognises the contributions of ELF and people living with CRDs. It showcases advocacy efforts and initiatives from patient organisations including ELF, the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) and Asthma + Lung UK. It also provides perspectives from patients with lived experiences on the everyday impact of CRDs. Although the report was mainly developed by clinical and policy experts, the inclusion of individual voices adds useful insight into the experience of living with CRDs.
Matt Cullen, member of the ELF Pulmonary Fibrosis Patient Advisory Group and advocate with the Irish Lung Fibrosis Association (ILFA), was invited to speak during the report launch session. He reflected on some of the challenges people with pulmonary fibrosis face, including delays in diagnosis and the need for more awareness and support across the care pathway.
This year’s Summit reinforced the importance of keeping patient-centredness at the heart of efforts to advance respiratory care. ELF was proud to be part of discussions that moved beyond diagnosis and treatment, looking upstream at how health systems, education, environments and legislation can work together to prevent disease.
ELF remains committed to making sure that the people living with lung conditions are at the heart of every conversation about respiratory health and commits to work with patient organisations and individuals on the actions proposed in the report.
Learn more and access the report on the ERS website: Chronic respiratory diseases: more than 80 million affected and many more undiagnosed, warns new WHO–ERS report.
