Really powerful patient stories this afternoon at USPFF Summit!

We’re excited to be attending the US PFF conference in the great city of Chicago! #ild

While the exact cause of #LungFibrosis isn't fully understood, risk factors increase the likelihood: – Smoking - Environmental/Occupational Exposure – Conditions like GORD – Genetic links Knowing the risks can help you get diagnosed earlier #PFAwareness #EveryBreathMatters #PulmonaryFibrosis

We are honoured to have the support of Rory and his family. Rory, Jamie and Ben are raising funds in memory of their beloved father, Michael McNeill, who passed away after a long battle with #IPF. The brothers are running the Paris-Versailles race on 28 Sept 2025. www.justgiving.com/page/michael...

Diagnosing #LungFibrosis isn't always straightforward but timely and accurate testing helps. Combining diagnostic tools and evaluation methods give clinicians a clearer picture, and a clearer picture means better care. #LFAwarenessMonth. #PFAwareness #EveryBreathMatters #PulmonaryFibrosis

Navigating a new lung fibrosis diagnosis can be overwhelming, but you're not alone. ILFA has lots of resources available on our website: www.ilfa.ie. Just one quick reference: ilfa.ie/wp-content/u... #LFAwarenessMonth. #PFAwareness #EveryBreathMatters #PulmonaryFibrosis #LungFibrosis

For today's post, one of our wonderful patient advocates, Lorcan McMahon, describes his journey with #lungfibrosis www.independent.ie/regionals/wi... #LFAwarenessMonth. #PFAwareness #EveryBreathMatters #PulmonaryFibrosis

Interstitial lung disease is a group of conditions that cause inflammation and scarring in the lungs. This JAMA Patient Page describes types and causes of interstitial lung disease as well as its diagnosis, treatment, and prognosis. ja.ma/47mj7hg

ILFA is fighting for "Equitable Care" where every patient gets the care they need in the community where they live. Today, care varies widely depending on how close you are to an ILD specialist centre. Patients shouldn't have to travel to receive great care. #PFAwarenessMonth #EveryBreathMatters

ilfa.ie/lung-fibrosi... Today is the start of Lung Fibrosis Awareness Month 2025. Our #EveryBreathMatters campaign will highlight the everyday realities faced by lung fibrosis patients and caregivers. We hope you'll share our content and help us reach 1 million people! #PFMonth #LungFibrosis

Free #solar installs for the medically vulnerable - help us spread the word! ilfa.ie/blog/free-so...

We're celebrating the enactment of the Human Tissue Bill effective from today! This landmark legislation brings into effect a much‑anticipated “soft opt‑out” organ donation system, a milestone we've long supported. More information here: ilfa.ie/blog/ilfa-we...

Thanks to @irishmedicaltimes.bsky.social for helping us get the word out about #lungfibrosis! www.imt.ie/news/lung-fi...

We've been very busy advocating for better #lungfibrosis care this week! ilfa.ie/blog/an-advo...

ILFA Board member and CEO of EU PFF at the ERS Prevention Summit discussing lived experiences and pragmatic solutions to the challenges faced in pulmonary conditions.

The advantages of the clinical programme. In Ireland , the respiratory programme unfortunately excludes lung fibrosis. The advantages of community care completely lost on our patients.

A new way of looking at prevention. Considering the person at the centre…a systems approach. By doing this to reshape society, a population based approach, behaviour change is more successful and the interventions are more cost effective.

7 billion…the cost of reducing pollution vs 940 billion…the cost of the health impacts of pollution. Cleaning up pollution seems like an easy investment to make.

For every euro invested in prevention, there can be a 14 euro return and yet, Ireland invests just .3% of GDP in preventing chronic lung diseases. We’re in the bottom third of OECD countries.

It’s cheaper to avoid disease than it is to treat it.

“Prevention is a form of social justice.” Wise words from ERS President Silke Ryan at the ERS Presidential Summit on disease prevention.

Thanks so much to Rob Hurley and Sean O’Shea for supporting the launch of our new strategy for equitable care for lung fibrosis this morning at Leinster House. (pictured with Maureen O’Donnell, ILFA CEO)

Delighted to be launching our strategy today at Leinster House! Eqitable care for lung fibrsis patients ilfa.ie/blog/strateg...

Here at the Wheel Summit 2025 and no surprise, multi-annual funding is the most urgent priority for the 500 or so charities here in the room.

Just a few weeks away from the Human Tissue Bill coming into effect. Let's hope it results in more lung transplants! www.gov.ie/en/departmen...

One week to go until the 2025 Vhi Women's Mini Marathon and the excitement is building !!! Are you running for #TeamILFA? If so, we'd love it if you'd meet us for a group photo outside The Mont Hotel, Merrion Street Lower, at 11.15 am. Looking forward to seeing you there!

Our friends at @actionpfcharity.bsky.social did a great job explaining the results of the @boehringerglobal.bsky.social #FIBRONEER trials announced earlier this week. It looks very promising for patients! www.actionpf.org/news/landmar...

#NEWS: Pivotal FIBRONEER™-IPF and FIBRONEER™-ILD phase III full data in IPF and PPF presented at #ATS2025 and published in @nejm.org. IPF and PPF are serious conditions that can cause irreversible lung damage and continued decline in lung function. 🧪 👉 go.boehringer.com/1fG0l #LifeForward

Please consider organ donation and make your wishes known. You could save a life.

“It’s important to acknowledge the groundbreaking transplant work done here over the last 20 years and the incredible support of donors, medical staff, patients, and everyone who has made life giving transplants possible.” Professor Jim Egan at the 20th lung transplant anniversary celebration.

Waiting for the 20th anniversary of the first lung transplant ceremony to begin in one of the most gorgeous buildings in Dublin. The Mater hospital!

Announcing our amazing speaker lineup for the upcoming mental health #training day for #respiratory professionals (18th June at the Mater Hospital)! The event is free to attend but registration is essential. We still have a few places - email [email protected] to secure your spot! ilfa.ie/blog/mental-...

It's shocking that there is no disease registry for #lungfibrosis in Ireland. As Jack Welch used to say, "You can't manage what you can't measure!". It's great to see this strategy for establishing registries published. Well done Future of Registries Taskforce! cfri.ie/wp-content/u...

On the 17 June the Human Tissue Act 2024 will come into effect. Hopefully this will result in more #lung transplants. They've gone from 38 in 2019 to just 13 in 2024. A shocking decline! Let your family know your organ donation wishes - organ donations save lives. www.gov.ie/en/departmen...

The Clinical Advisor for ILD is looking for volunteers to join an ILD Working Group. They're looking for ILD consultants, nurses and physios to share their expertise and experience and help improve ILD health services. Deadline is May 15th 12:00 pm. DM if you're interested!

Final reminder for the Science Week Call 2025! The deadline for event applications is this Friday, 9th May at 1pm (Dublin Local Time). Find out more: www.researchireland.ie/funding/scie... #ScienceWeek #ResearchIreland

ILFA are privileged to have leading respiratory medical experts speak at our webinars! Huge thanks to: Cormac McCarthy, Nazia Chaudhuri, Zita Lawlor, Sara Winward, Carol Doherty. Thanks also to Helena Dilleen for Mindfulness and to Frank Brannigan for so strongly representing the patient community.

The latest issue of the #AJRCCM is now live! Take a look: 🔗 www.atsjournals.org/toc/ajrccm/2...

You can help our charity raise critical #funds without having to give up your own hard earned cash. Nominate ILFA for the Benefact Award - between now and 4th May! health.movementforgood.com#nominateACha...

Oxygen access is a huge problem for lung fibrosis patients. The EU PFF theme for pulmonary fibrosis awareness month this September will be Oxygen Now.

Some of the DEI variables for pulmonary fibrosis

An interesting model of inclusion at each stage of the disease journey. The system can fail or succeed at each point.

Diversity is truly reflected in determinants of health…from the WHO.

For lung fibrosis, DEI is important. People in rural communities are often excluded, there can be a lack of research involving women, etc.

And the many ways in which to involve patients in research (from EUPATI)

It’s so important to include patients in the design of clinical trials

An excellent example of evidence based advocacy for pulmonary fibrosis.

A really helpful diagram from EU PFF outlining steps and hypothetical timelines for running a study to support evidence based decisions in patient advocacy.

A powerful introduction for this afternoons EUPFF advocacy session on informed choice by Dr Anne Marie Russell

Very interesting session by the EMA on the Marketing Authorisation process emphasising patient inputs particularly early on.