Patient representatives take an active role at the ERS Congress 2025

ELF was proud to facilitate patient involvement at this year’s event, supporting representatives from ELF patient advisory groups (PAGs) and the Patient Organisation Network to attend and participate. Patients played a visible and impactful role, including taking part in patient-centred studio sessions, sharing personal experiences through videos and connecting with researchers and other patients in the World Village. 

One notable highlight in this year’s programme was the introduction of patient-centred studio sessions. Co-chaired by patient representatives, these sessions provided a platform for patients to discuss topics such as access to care and the challenges faced by individuals with chronic lung conditions. These sessions were well-attended and sparked meaningful discussions among healthcare professionals and researchers. 

Patient representatives contributed to the Congress programme in other ways, including: 

• Patient Organisation Networking Day: On 27 September, ELF hosted a networking day where patient organisations presented their work, fostering collaboration and knowledge exchange among attendees. 

• Presentations and panels: Patients shared their experiences in scientific sessions, including topics like the global burden of neonatal and infant respiratory diseases, fitness for tumour-specific treatments of lung cancer and interstitial lung diseases around the world.  

• World Village activities: The ELF stand served as a hub for informal discussions, allowing patients to connect with each other, as well as researchers and healthcare professionals. 

• Wednesday workshops: This year’s workshops focused on co-design and patient involvement in respiratory innovation and highlighted the importance of integrating patient perspectives into research and clinical practice. 

These activities helped present to Congress delegates the important role patients play in shaping the future of respiratory health. Their involvement not only enriches the Congress programme but also ensures that research and clinical practices are aligned with the needs and experiences of those affected by lung conditions. 

Patient Advisory Groups in action 

The Patient Advisory Groups (PAGs) were particularly active at the Congress, participating in multiple ways that illustrate the wider patient contribution:

• Sarcoidosis Patient Advisory Group: Members of the Sarcoidosis Patient Advisory Group met on Sunday 28 September during the ERS Congress 2025 and discussed a range of topics including the patient work package for the new SARCOIDOMICS ERS Clinical Research Collaboration (CRC). The President and Vice-President of the Euro Sarcoidosis Research Fund, which is based in The Netherlands, were also invited to talk to the group about their organisation and plans.
• Pulmonary Hypertension Patient Advisory Group: The Pulmonary Hypertension (PH) PAG met on 30 September during the ERS Congress 2025. Members gave feedback on interesting sessions they had attended as well as updates from their attendance at Task Force and CRC meetings. The group discussed plans for PH Awareness Month in November plus the need for more education and awareness of PH in Ukraine.
• Bronchiectasis Patient Advisory Group: Four members of our Bronchiectasis Patient Advisory Group attended all or part of the ERS Congress 2025. Members participated in a range of ways including presenting on patient activities at the EMBARC General Assembly meeting; recording patient experience videos which were shown in Congress sessions and being panellists in two of the patient-centred studio sessions. They also attended scientific sessions of interest and will feedback on these to the wider PAG at future meetings.
• COPD Patient Advisory Group: COPD PAG representatives spoke in ERS Congress sessions on pulmonary rehabilitation and joined project discussions to help define the most important outcomes of COPD treatment from a patient perspective. They also contributed to lively debates about how to turn the World Health Organisation’s Lung Health Resolution into local action, setting out the priorities for people living with COPD.
• Asthma Patient Advisory Group: Members of the asthma PAG joined a wide range of project meetings in person and online. They ensured patient perspectives were considered during discussions to define remission and treatment in severe asthma, how women with a lung condition should be supported during pregnancy, and to identify future research priorities. PAG members also chaired and spoke during sessions highlighting the needs of family and informal caregivers and some of good practices they have experienced to bridge the communication gap between patients and professionals.The asthma PAG are busy planning the upcoming severe asthma patient conference on 22 November – to find out more and register to attend, please visit the event page.
• Aspergillosis Patient Advisory Group: Two members of the Aspergillosis Patient Advisory Group attended the ERS Congress 2025. While there was no formal PAG meeting, members participated in a range of ways, such as supporting the ELF Communications team, recording patient experience videos, and sitting as panellists in the ‘Bridging the communications gap’ studio session.

“Attending the ERS Congress this year was a valuable and inspiring experience, both personally and in my advocacy role. The networking opportunities were excellent, and it was a real highlight to connect with so many professionals, researchers, and fellow patients working across the field of lung health.” – Lisa McNeil, Aspergillosis PAG member.

To learn more about our Patient Advisory Groups, or get involved yourself, please visit our Patient Advisory Groups page or email us: info@europeanlung.org.