Summary of the ELF Annual Stakeholder Meeting 2024

Thank you to everyone who attended this year’s stakeholder meeting. 97 stakeholders, including 38 patients and 15 patient organisation representatives, joined us to celebrate our achievements from the past year and input into our future priorities. 

ELF Chair, Dimitris Kontopidis, and members of the ELF Council led this year’s event and shared their highlights, from improving education and awareness of lung diseases in our patient conferences, to increasing patient involvement at the ERS Congress 2024. 

We used the opportunity to highlight the work of our Patient Advisory Groups (PAGs) and the achievements of our new Youth Group. The progress of the Healthy Lungs for Life for Schools campaign was also discussed. We were delighted to receive interest from some of you to join our PAGs and Youth Group, as well as interest in promoting the Healthy Lungs for Life for Schools project. Please contact us if you would like to find out more.  

Attendees were able to offer feedback throughout the session through polls and in our Q&A. These discussions help us to understand our strengths and where we can improve. They also play a key role in shaping future priorities. 

This year we found out that: 

• Equal access to treatments is an important topic for our stakeholders. There were suggestions to increase information on the ELF website by including data on the latest clinical trials and research centres within different countries. This could improve access to therapies. 

• Patient involvement at the ERS Congress is valuable and we were pleased to report that this had increased in 2024. Opportunities for patients at the ERS Congress is a hot topic for our stakeholders and there are ways we can improve this in the future. Attendees shared that it was valuable for patients to present at the ERS Congress but there could be more opportunities to speak directly with researchers and clinicians. There were also suggestions to have patient testimonials displayed within the Patient Community Space to amplify the patient voice. ELF has planned a meeting with the International Congress Programme Committee (ICPC) for the ERS Congress to discuss these ideas. 

• Many of our PAGs feel they would benefit from improved access to published research. Sharing lung health information in an accessible way is important to us and you can read lay summaries of published research here. We plan to explore how we can do more of this in our workplan for 2025-2026.  

• ELF could better promote how patients are involved in their activities. It was suggested that we make plans to share more information about the projects and activities that each of our PAGs are involved in. We will explore new ways to promote the work of our PAGs and share regular updates from stakeholders. 

Polls taken on the day show that the event educated stakeholders on the work of ELF and Lungs Europe, with the majority stating afterwards that they had a better understanding of the work of both. This improved understanding can ensure we have aligned visions and helps us in our mission to improve lung health for all.

There was so much more that we could cover, but as always limited time and resources means it is essential we focus on what is most important to you. Thank you to everyone who came, and we hope that even more of you will join us in 2025!