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ilfa-ireland.bsky.social
Supporting patients and the lung fibrosis community with education, advocacy, research, and direct services.
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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...

submitted 7 days ago • 0 comments

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

submitted 11 days ago • 0 comments

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

submitted 11 days ago • 0 comments

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.

submitted 12 days ago • 0 comments

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.

submitted 12 days ago • 0 comments

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.

submitted 12 days ago • 0 comments

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.

submitted 12 days ago • 0 comments

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.

submitted 12 days ago • 0 comments

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

submitted 12 days ago • 0 comments

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

submitted 12 days ago • 0 comments

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)

submitted 13 days ago • 0 comments

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

submitted 13 days ago • 0 comments

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.

submitted 27 days ago • 0 comments

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...

submitted 28 days ago • 0 comments

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!

submitted 29 days ago • 0 comments

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...

submitted 33 days ago • 0 comments

#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

submitted 35 days ago • 0 comments

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

submitted 39 days ago • 0 comments

“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.

submitted 39 days ago • 0 comments

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!

submitted 39 days ago • 0 comments

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-...

submitted 40 days ago • 0 comments

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...

submitted 41 days ago • 0 comments

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...

submitted 43 days ago • 0 comments

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!

submitted 47 days ago • 0 comments

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

submitted 49 days ago • 0 comments

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.

submitted 53 days ago • 0 comments

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

submitted 53 days ago • 0 comments

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...

submitted 55 days ago • 0 comments

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.

submitted 59 days ago • 0 comments

Some of the DEI variables for pulmonary fibrosis

submitted 59 days ago • 0 comments

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

submitted 59 days ago • 0 comments

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

submitted 59 days ago • 0 comments

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

submitted 59 days ago • 0 comments

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

submitted 59 days ago • 0 comments

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

submitted 59 days ago • 0 comments

An excellent example of evidence based advocacy for pulmonary fibrosis.

submitted 60 days ago • 0 comments

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

submitted 60 days ago • 0 comments

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

submitted 60 days ago • 0 comments

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

submitted 60 days ago • 0 comments

Fascinating lecture on the drug development process at the EU-PFF Advocacy Summit.

submitted 60 days ago • 0 comments

Calling all respiratory professionals! ILFA is offering a mental health training day. Email [email protected] to register your interest.

submitted 63 days ago • 0 comments

We were delighted to award educational bursaries to allow four healthcare professionals to attend the ERS's Interstitial Lung Disease Course recently. Lindsay Brown, Grainne Coffey, Carol Doherty and Dervla Leonard (pictured) were "inspired to see the global efforts being made to advance ILD care."

submitted 68 days ago • 0 comments

9th April, @rcsi.bsky.social opened Ireland’s first patient dedicated stem cell research facility in the Smurfit Education and Research Centre at Beaumont Hospital. Congratulations @killianhurley.bsky.social, the Living Lung Lab Research Team, and to patient advocates David and Katie Crosby.

submitted 68 days ago • 0 comments

We are so glad you could join us! Thank you for being part of such a vibrant and inspiring day of connection and collaboration! #RareDiseaseResearch #StrongerTogether

submitted 71 days ago • 0 comments

The AJRCCM invites authors to submit their original research on new insights into the pathology, diagnosis, and treatment of ILD @atscommunity.bsky.social #medsky FIND OUT MORE HERE: tinyurl.com/mtp3skmt SUBMIT HERE: tinyurl.com/3h7dmm2x

submitted 74 days ago • 0 comments

ILFA at the Rare Disease Research Conference yesterday. From left to right: Colin Edwards, @eddy767.bsky.social, Liam Galvin, Kelly McVicker and Gemma O'Dowd. An absolutely fabulous day and huge thanks to @rarediseasectn.bsky.social for helping us get the word out about #lungfibrosis!

submitted 74 days ago • 0 comments

RCSI has opened Ireland’s first dedicated patient stem cell research facility in our Education and Research Centre at Beaumont Hospital. It will enable clinically informed and comprehensive testing of personalised treatments. ➡️ www.rcsi.com/dublin/news-... #RCSIdiscover @killianhurley.bsky.social

submitted 75 days ago • 0 comments

Session Two: Stakeholder Perspectives on Rare Disease Clinical Trials. How do regulators, patients & industry collaborate in rare disease research? Join chairs Prof Elisabeth Bendstrup and Prof Sean Gaine as we hear diverse perspectives shaping clinical trials! #RareResearch25

submitted 75 days ago • 0 comments

Palliative care isn't just for people who are dying and it's not just for cancer patients. These are important myths to bust. Great podcast episode from @hselive.bsky.social on the full depth and breadth of #palliative care in Ireland. www.podbean.com/ew/pb-98zfr-...

submitted 81 days ago • 0 comments

If you're supporting a vulnerable community, the @hselive.bsky.social has opened the spring Covid booster vaccination programme.

submitted 82 days ago • 0 comments