European Summit Calls for Urgent Action to Ensure No Pulmonary Fibrosis Patient Is Left Behind
The European Pulmonary Fibrosis Patient Summit 2026 brought together patients, caregivers, clinicians, researchers and policymakers from across Europe in Brussels for three days of collaboration focused on improving care for people living with pulmonary fibrosis and related interstitial lung diseases (ILDs).
Organised by the European Pulmonary Fibrosis Federation, the Summit highlighted ongoing gaps in diagnosis, access to care and support, particularly for those living with rare, complex or overlapping conditions.
Delegates from Pulmonary Fibrosis NI played a key role throughout the event, ensuring that patient and caregiver voices were central to discussions along with valuable input from our health care professionals.
Key highlights from the Summit included:
- Advances in science and innovation, with experts highlighting progress in diagnostics, biomarkers and emerging therapies
- Policy and access discussions, examining how healthcare systems across Europe impact patient outcomes
- A major roundtable on gaps in care, exploring why many patients remain unrecognised or unsupported
- A focus on caregivers, recognising their critical role and the need for greater support
- Shared decision-making in healthcare, promoting partnership between patients, families and clinicians
Specialist ILD nurse and PFNI Trustee, Pat Gorman emphasised the reality behind delayed diagnoses and unequal access to care, highlighting that progress must be felt by patients in their everyday lives.
Una McMillan, patient representative and PFNI Trustee, contributed to discussions on the challenges faced by families navigating complex diagnoses, stressing the need for clearer pathways and improved awareness across healthcare systems.
Chair of PFNI and caregiver, Tom McMillan reinforced the importance of lived experience in shaping better healthcare:
“Patients are not just recipients of care, they are partners in creating better ones.”
Dr Nazia Chaudhuri, respiratory physician and Trustee, highlighted the importance of compassion in modern care:
“Communication and compassion are now central to how we deliver care and support patients through their journey.”
The Summit concluded with a strong call to action: to ensure earlier diagnosis, equitable access to care and stronger support systems for every patient, regardless of how rare or complex their condition may be.