This PF Awareness Month, we’re asking people across the UK to Take Action for PF. At Action for Pulmonary Fibrosis, we’re taking that message into conversations with international researchers, healthcare professionals and industry, making sure the needs and priorities of people affected by PF are heard.

Our Chief Executive, Daniel Saxton, attended the Congress alongside Bradley Price, Director of Policy, Research and Involvement, and Becky Williams, Head of Fundraising. Together, the team shared evidence from our community, supported researchers presenting their work and met organisations working to improve treatment and care.

Held from 5 to 9 September, the Congress brought together the international respiratory community. This year’s theme, “United for better breathing: partnership between patients, clinicians and researchers”, reflected why APF’s involvement matters: people’s experiences should help shape the research and care that affect their lives.

Bringing your experiences into research

Bradley presented a research poster drawing on APF’s State of the Nation survey, which received 1,270 responses from people affected by pulmonary fibrosis.

The findings showed that many people still face challenges getting the right diagnosis and specialist care. Around a third of respondents reported having initially received a different diagnosis. Women reported longer routes into specialist respiratory care and were more likely to say they had not felt listened to.

The survey also showed the impact treatment can have on everyday life. More than 90% of respondents with idiopathic pulmonary fibrosis (IPF) who had taken antifibrotic medicines reported side effects, while many people described gaps in access to support.

Presenting this evidence at an international scientific meeting helps put the experiences of people living with PF alongside the clinical and scientific research being discussed.

For everyone who contributed to the survey, this is one way your voice is helping us make the case for better care, both in the UK and internationally.

Working together to improve care

Throughout the Congress, our team met healthcare professionals, researchers, charities, patient organisations and industry representatives.

These conversations were an opportunity to share what people affected by PF in the UK are telling us, learn from work elsewhere and explore how we could work together. We brought a focus on the things that matter in everyday life: getting answers sooner, finding the right support and accessing treatments that are effective and manageable.

Sharing expertise, data and patient experience across countries and organisations can help tackle questions that are difficult for any one group to answer alone. Taking Action for PF includes building these relationships and keeping our community’s priorities part of discussions about future research, treatment and care.

Supporting researchers to share their work

Three researchers attended with support from APF Conference Awards, each looking at a different part of the experience of living with lung disease.

Dr Nieve Martin presented research into the lung transplant pathway for people with interstitial lung disease in Northern Ireland. Her work looked at what happens to people after they are referred and showed why the timing of referral can matter for those who may need a transplant.

Rebecca Connor, a medical student at Ulster University, shared research into a mobile app for people with IPF. The app allows people to record symptoms, access information and support conversations with their healthcare team between appointments. People with IPF helped shape the study from the beginning.

Dr Shweta Agrawal, a respiratory registrar, presented work looking at a diagnostic challenge in sarcoidosis. Symptoms such as cough, wheeze and breathlessness can sometimes be mistaken for asthma. Understanding more precisely what is causing someone’s symptoms could help them receive more appropriate treatment.

Together, these projects cover questions that matter to people living with lung disease: getting the right diagnosis, reaching treatment at the right time and having better support to manage a condition day to day.

Our Conference Awards help researchers share their findings and connect with others who can contribute to their work.

Finding PF earlier and understanding what happens next

One of the strongest themes across the Congress was how we might find pulmonary fibrosis earlier and understand more accurately how it could progress.

Researchers are studying very early changes that can sometimes appear on lung scans before someone has a diagnosed interstitial lung disease. These are known as interstitial lung abnormalities, or ILAs.

International groups are working together to understand which changes are important, who may need closer monitoring and who may be at greater risk of developing disease.

There was also considerable interest in predicting how PF may progress. The condition can behave very differently from one person to another, and uncertainty about the future can be difficult for people living with PF and their families.

Better prediction could eventually help people and their clinical teams make more informed decisions about monitoring, treatment and care.

Can technology and AI help?

Technology and artificial intelligence were also prominent across the Congress.

Researchers are exploring whether AI can help doctors find patterns in lung scans and other health information, identify early signs of disease and track changes over time.

These approaches are still developing and will need careful testing. The potential is to give clinical teams better information to support their decisions and, in time, help people receive more personalised care.

New approaches to treatment

There was also discussion about possible new ways to treat pulmonary fibrosis.

Some studies are looking at treatments that could slow the loss of lung function, including in people whose lung function is still relatively well preserved. This adds to the growing interest in whether treating disease earlier could help protect lung health for longer.

Other research is focused on symptoms that have a major effect on everyday life. Several studies looked specifically at chronic cough, exploring whether new treatments could reduce coughing and improve quality of life. Side effects remain an important part of judging whether any new treatment offers a real benefit.

Researchers are also asking what should happen when someone’s PF continues to progress despite treatment. One study is comparing whether it may be better to change treatment, combine existing treatments or continue with the same approach.

This is an important question because treatment decisions are not only about lung tests. They are also about how people feel, whether side effects are manageable and whether treatment helps them live as well as possible.

Many of the approaches discussed at ERS are still being researched, so it is too early to know which will become available. But a wider range of approaches is being studied, from slowing disease progression to easing symptoms and finding better ways to use treatments together.

Keeping people affected by PF at the centre

Bradley Price said:

“What has really stood out at this conference is the amount of work happening across pulmonary fibrosis, from earlier diagnosis and better support to new treatments. At APF, we want to make sure that research starts with what matters to people affected by PF, and that their experiences help shape better research, better services and better care.

“It has also been brilliant to see researchers supported through our Conference Awards sharing their work on an international stage. There is a real sense of possibility at the moment, but progress is not simply about having more treatments. We need treatments that slow the disease, are easier to live with and help people maintain their quality of life. There is still a long way to go, but it is encouraging to see so much work focused on the issues that matter most to patients.”

Our attendance at ERS is part of our continuing work to turn the experiences of people affected by PF into action. We will keep working with our community, researchers, healthcare professionals and partners to help turn progress in research into earlier diagnosis, better treatment and better care.

This Awareness Month, you can take action too. Whether you share information, tell your story, bring people together or speak up for better care, choose an action that feels right for you.

Choose how you’ll Take Action for PF.