Summary of ELF annual stakeholder meeting 2023

It is so important for us at ELF to get input from all our stakeholders to ensure that the work we are doing is driven by patients, reflects the needs of our wider communities and is of real value to everyone who works with or relies on ELF.  Each year we hold a stakeholder meeting to discuss our achievements of the last year and shape our strategic activities and priorities for the next financial year.

Thank you to everyone who attended this year’s stakeholder meeting. This year we introduced our new Chair, looked back on some of our successes from the last year including our patient organisation networking day at Congress and Healthy Lungs for Life, and looked at our priorities moving forward. 

Around 50 people spanning 24 countries took part in the conversation and we found out that: 

  • Expanding our networks is of great importance to you, with suggestions to engage non-patient audiences, offer more rare disease specific sessions at patient organisation networking day, and to find ways to engage countries outside of Europe. 
  • The themes of climate change, air pollution and mental health are incredibly important to you, as are AMR and lung transplantation. We will ensure that we work with these themes over the next 18 months to reflect your concerns.  
  • Whilst most of you feel connected to ELF and a part of our family we could be doing more to engage and support you, including having a monthly drop-in meeting where we can offer advice or take direction from you.  
  • Those of you who came to Patient Organisation Networking Day at Congress got real value from it, but would like more opportunities to mix and network with people from other patient organisations. This is something we will work on ahead of Vienna! There was also the suggestion to have more patient sessions included across the whole of Congress and we will have a conversation with ERS about this.  

There is 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 2024!