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Surveys and reports

State of the Nation 2026

Our State of the Nation report is the most comprehensive survey of people living with PF that has ever been undertaken.

Backed by a survey of more than 1,200 people, the report highlights how those living with pulmonary fibrosis (PF) experience high rates of misdiagnosis, delays and unequal access to treatment and support across the UK.

Urgent change is needed

Though the findings of State of the Nation are stark, they also show where change is possible.

By bringing PF care closer to home, embedding specialist care within regional networks and implementing consistent standards across all four UK nations, we can ensure everyone living with PF receives the care and support they desperately need.

Action is now urgently needed to strengthen ILD services across the UK through clear time-bound pathways and consistent standards of care.

Our Commitment

Action for Pulmonary Fibrosis (APF) is committed to using this report as a catalyst for change.

The experiences and insights shared within it will directly drive our work over the coming years, shaping what we prioritise and how we deliver support.

We will use this evidence to work alongside healthcare professionals, commissioners and policymakers. Together, we can address gaps and inequalities and push for faster diagnosis and improved access to specialist care, treatment and support for everyone affected by pulmonary fibrosis.

We will continue to amplify the voices behind these findings, because real change only happens when lived experience is listened to, acted on and built into every decision about patient care and services.

Progress must be visible, measurable and delivered. Our community cannot wait.

Download

Full Report

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Survey Summary

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Key Stats

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Shaped by lived experience

We are sincerely grateful to the people living with PF, along with their families and carers, who contributed to our State of the Nation report.

Your support matters

Support our work to ensure everyone affected by PF has access to the care they need, donate today.

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