Patient Organisation Networking Day report 2025: turning global lung health priorities into local action

On 27 September 2025, over 100 representatives from patient organisations around the world met in Amsterdam and online for the ELF Patient Organisation Networking Day 2025. The event, themed “Improving respiratory health – thinking globally, acting locally”, used the WHO Lung Health Resolution as a framework to explore how patient organisations can push for change in lung health for the communities they serve. 

Discussions and key findings 

During breakout sessions, delegates discussed what the resolution means for patients, what their organisations are already doing and what further actions are needed. While awareness of the resolution remains low, participants welcomed its inclusive intent and advocacy potential. 

Delegates identified gaps in the report, and points they felt were not strong enough, including: 

• Early and accurate diagnosis of lung conditions 

• Holistic, multidisciplinary care including psychological and social support 

• Equal access to services for all patients 

• Recognition of caregivers and marginalized communities 

• Stronger collaboration between WHO, governments and patient organisations 

Many organisations are already addressing these priorities through national campaigns and advocacy for better referral pathways and sharing resources across national and international networks. 

Next steps and opportunities 

Participants proposed additional strategies to strengthen patient-led action: 

• Building stronger networks of patient organisations nationally and internationally 

• Expanding community education with trusted local voices 

• Partnering with organisations in other disease areas 

• Encouraging patient engagement with policymakers 

• Using patient stories and robust data to inform advocacy 

• Improving equity of access and translating policy into lived experience 

ELF will continue to support these efforts by sharing the full 2025 report, following up with participants on local and national plans and collaborating with WHO and ERS to keep patient perspectives central in global lung health initiatives. 

Although outcomes came from a meeting of patient organisation representatives, they are of interest to the wider ELF network and anyone engaged in improving lung health.

Read the full report