ELF holds Annual Stakeholder Meeting to shape 2026-2027 priorities

The Annual Stakeholder Meeting 2025 was hosted by ELF Chair, Dimitris Kontopidis, and ELF Director, Pippa Powell, alongside members of the ELF Core Council members on Thursday 16 October 2025. Key contributions came from:

• Liam Galvin, Patient Advisory Committee (PAC) Chair, on PAC activities, the ERS Congress and Patient Organisation Networking Day, sharing plans for the 2026 Congress.
• Helen Parks, United Patient Advisory Group (UPAG) Chair, providing updates on the fantastic initiatives of the Patient Advisory Groups (PAGs).
• Natalia Maeva, ELF Council member, presenting on cross-disease Working Groups, highlighting topics such as mental health and transplantation.
• Zena Powell, ELF Council member, speaking on behalf of Ed Powell, the ELF Youth Group Chair, on Youth Group initiatives and its growing impact.

The open session provided a platform to review past and current activities and help shape priorities for 2026-2027. Participants included patients, carers, healthcare professionals, PAC and PAG members and representatives from the wider ELF patient organisation network.

Key discussions

The meeting highlighted several key areas of focus for ELF in the coming year, including digital health and knowledge hubs, mental health, pulmonary rehabilitation, youth engagement, a growing need for paediactric patient involvement, advocacy and prevention.

Participants shared their priorities during the meeting, which included:

Patient engagement and partnerships

Participants emphasised the importance of involving patients early in research and innovation. Discussions highlighted opportunities for patient contributions to scientific publications, ERS Congress sessions and digital health platforms. Suggestions included expanding patient participation at the ERS Congress and implementing interactive activities to ease concerns about research participation.

Mental health

Mental health emerged as a foundational priority. ELF’s Mental Health Working Group, chaired by Jean-Michel Fourrier, and the upcoming Mental Health First Aid Toolkit were highlighted as key initiatives. Participants suggested integrating mental health support into patient engagement activities, reflecting its cross-cutting importance.

Schools and youth engagement

Youth engagement remains a growing focus. Pippa Powell, ELF Director, presented the Healthy Lungs for Life school programme and grant-funded projects, aiming to raise awareness, promote healthy habits and involve young people in advocacy. Participants also discussed creating a paediatric group for children and parents, ensuring lung health education reaches all ages.

Pulmonary rehabilitation and sleep

The meeting identified gaps in pulmonary rehabilitation access across Europe and highlighted sleep health as an area of growing importance. Discussions stressed better coordination, patient education and leveraging digital self-management tools.

Carers’ involvement

The complementary role of carers in patient care was highlighted, with encouragement for initiatives that reflect the experiences of both patients and carers.

Patient publications

Opportunities for patient involvement in scientific publications were explored, including contributions to European Respiratory Society journals and patient sections within research monographs. Participants suggested ways to amplify the patient perspective in research and clinical communication.

Patient voices

Participants shared heartfelt reflections on the impact ELF has had. Janette Rawlinson, member of the ELF Lung Cancer Patient Advisory Group, said:

“I think the expansion of what ELF has done and is doing in the 10 years I’ve been involved is admirable and awesome. One of the things that I’ve always found inspiring is the amazing stories of people who actually do so much with a lung condition… it gives hope and inspiration to others of all ages.”

Dimitris Kontopidis, ELF Chair, closed the meeting with an inspiring message:

“Having friends who understand similar difficulties gives us courage. We can support each other and share strength with co-patients who feel less informed or less empowered.”

Looking ahead

ELF leadership outlined plans for 2026–2027, including collaborations with the WHO, UN and EU initiatives, as well as the launch of next year’s Healthy Lungs for Life grants for global community, youth and school-based lung health projects. Participants were encouraged to join task forces, review opportunities and volunteer for initiatives to ensure broad engagement across the network.

Get involved

• To learn more about Healthy Lungs for Life, please contact katherine.wylie@europeanlung.org
• For more information on task forces, research, patient groups, and other opportunities, please contact info@europeanlung.org
• Learn more about the ELF strategy and ongoing activities in the latest annual report.

Next steps

• Improve social media engagement and cross-posting with national organisations to amplify shared voice and values.
• Increase patient participation at the ERS Congress, including speaking opportunities and roundtables.
• Expand youth engagement and establish paediatric groups for children and parents.
• Prioritise mental health, sleep and pulmonary rehabilitation resources and campaigning.
• Develop clearer guidance and opportunities for patient contributions to research and publications.
• Continue to highlight prevention strategies, lifestyle interventions and educational initiatives.
• Emphasise carers’ roles and foster collaborative patient-carer approaches.
• Celebrate inspiring stories of progress in lung conditions to promote hope to all stakeholders.
• Address emerging challenges in digital health, self-management and severe lung disease care.

Other ways to support ELF

Your donations can help us strengthen and expand the work we are doing and ensure that patients across Europe:

• Have access to the latest information
• Have their voices represented in policy actions
• Can continue to join meetings with those who share their experiences.

ELF currently receives around €4,000 per year in donations from its community and every contribution helps us in our mission to bring patients and the public together with healthcare professionals to improve lung health and advance diagnosis, treatment and care.