Calling all ILFA Golfers!

Did you know many golf clubs in Ireland engage in charity partnerships? In 2026 we’re hoping to partner with golf clubs across Ireland. If your golf club donates to charity or might be open to hosting a fundraising day in support of ILFA, let us know and we can reach out to them.

Contact Gemma@ilfa.ie for more details.

Thank you for your continued support — together we can make a real difference!

We are delighted to have a few new support groups starting up this year. Our most recent groups are meeting in Donegal and then we have a virtual offering as well for those who aren’t located near an in-person group. Both groups will hold meetings in early December. All are welcome.

The Donegal Pulmonary Fibrosis Support Group meeting will take place at 2pm on Wednesday 3rd December 2025, at Trinity Hall, Cathedral Square, Ard O’Donnell Road, Letterkenny. This meeting will be hosted by Carol Doherty, Respiratory Advance Nurse Practitioner,  Therese Dooley, Respiratory Physiotherapist, Letterkenny University Hospital and Gemma O’Dowd, ILFA’s Stakeholder Engagement Lead.

Please contact Gemma to register your interest in joining the Donegal meeting @ 086 0570310 or email gemma@ilfa.ie.

The Virtual Support Group will commence on 1st Dec at 2 pm. This will be on-line via Zoom and hosted by Lynn Fox, Advanced Nurse Practitioner and Gemma O’Dowd, ILFA’s Stakeholder Engagement Lead.

You can also contact Gemma to register for the virtual support group or you can register at the following link: https://us02web.zoom.us/meeting/register/XNKPkufUTASMPb559gi-yw

 

Christmas cards are available and this year we’ve mixed things up a bit. Our latest 2025 designs are available in packs of 12 (6 designs) for 10 euros each (postage included).

Additionally, we have overstock from previous years if you’re looking for a value purchase. While they last, you can purchase previous year stock for just the price of postage!

For more information on the designs available or to buy your cards, contact Kelly at info@ilfa.ie

Our final Let’s Talk session of 2025 will feature Prof Sean Gaine of the Mater Misericordiae Hospital who will deliver a ‘Let’s Talk Pulmonary Hypertension’ to ILFA members online on Wed 10 December at 2 pm. 

Pulmonary hypertension (PH) refers to high blood pressure in the blood vessels that supply the lungs. The diagnosis of PH is frequently delayed as the symptoms associated with this condition are often confused for other respiratory or cardiac conditions. These symptoms can include fatigue, shortness of breath, chest pain, palpitations, dizzy spells, faints and leg swelling.

If you’d like to register to attend this informative session, follow this link: https://us02web.zoom.us/meeting/register/wxWd4vIGToe5bag7uGpQGQ or contact Kelly at info@ilfa.ie

About Professor Gaine:

Prof Sean Gaine is Consultant Respiratory Physician at Mater Misericordiae University Hospital in Dublin and director of the National Pulmonary Hypertension Unit. Prof Gaine completed his medical education at Trinity College Dublin and his medical residency and fellowship training at the Johns Hopkins Hospital, Baltimore. During his Pulmonary and Critical Care fellowship Prof Gaine obtained his PhD for work exploring the control of pulmonary vasculature function. He subsequently held faculty positions at the Johns Hopkins Hospital and at the University Of Maryland School Of Medicine. He established the Pulmonary Hypertension Center at the Johns Hopkins Hospital in 1999 and subsequently the National Pulmonary Hypertension Unit upon his return to Dublin. His research interests include novel biomarkers and new therapeutic agents in pulmonary vascular diseases. Prof Gaine has been a working member of the European Society of Cardiology and European Respiratory Society guidelines committee on Pulmonary Hypertension in the past and a task force member of the WHO World PH symposiums since 2003. Professor Gaine is a member of numerous international associations, and is a Fellow of the College of Chest Physicians, the Royal College of Physicians in Ireland and the Faculty of Sports and Exercise Medicine. He is Chief Medical Officer of the Olympic Council of Ireland and led the medical team at the Olympic Games in Athens, Beijing and London.

Topic: “Pulmonary Fibrosis Cough: What causes it and what can we do about it?”

Cough is one of the most persistent and debilitating symptoms of pulmonary fibrosis. But what exactly causes it? And what can be done to manage it?

Join EU-PFF for an insightful session where we will explore:

Speakers:

Dr. Philip Molyneaux, Royal Brompton Hospital & Imperial College London.
Andy Straw, patient with PF Cough, UK.

Moderator:
Steve Jones, Emeritus President, EU-PFF

The session will include time for audience Q+A

Date & time: November 4th, 2025 | 19:00-20:00 CET | 18:00-19:00 GMT

 

REGISTER HERE: https://us06web.zoom.us/webinar/register/WN_Due-8GqEQ5q6aa1213MjoA#/registration

ILFA’s second Patient Information Day of 2025 took place on Tuesday, 21st October 2025 at 11am. This event included presentations from:

You can watch the video here on our YouTube channel: https://youtu.be/-BPXc9MgmzA

Don’t forget to Like and Subscribe!

We’re delighted to announce that registrations are now open for the ILFA Patient Information Day, taking place on Tuesday, 21st October 2025 at 11am until 1pm.

This event will include expert presentations from:

We look forward to welcoming you!

To register: https://us02web.zoom.us/webinar/register/WN_ibhx4JAmQu-6Cq9V6h1h6w

The ILFA Service of Prayer and Reflection will take place on Saturday 4th October at 4pm at Our Lady of Mount Carmel Whitefriar Street Church, Aungier Street, Dublin 2. We look forward to welcoming you to the Service. Afterwards tea, coffee, and treats will be served in the Carmelite Community Centre. If you are attending and are in a position to bring some home baking, cakes or biscuits along for everyone to enjoy, we would be most grateful.
The ILFA Ecumenical Service will be livestreamed and can be accessed with the links belowhttps://whitefriarstreetchurch.com/
https://www.churchservices.tv/whitefriarstreet

September was Lung Fibrosis (or Pulmonary Fibrosis) Awareness Month and we were delighted this year that our Every Breath Matters, Know the Signs campaign helped get the word out across the country. We think we achieved our goal of more than 1 million people in Ireland reached. Here’s how we did it.

So now….at the close of our awareness month…what has all this activity meant?

It’s meant there are people who now know about lung fibrosis who didn’t know about it before. Maybe they’ve been having symptoms and dismissing them or maybe they’ve seen a family member struggling but didn’t know what to do. Now they know. It’s also meant that people who might have been diagnosed but weren’t referred to a specialist centre or who didn’t know about ILFA are now aware of resources that can support them.

We hope that the campaign has made people aware of lung fibrosis.

We hope that people experiencing symptoms will now get diagnosed.

We hope that people who have been diagnosed will now get better care and support.

A successful campaign – we hope this is what we’ve achieved together.

Thank you for helping us get the word out!

Note: Lung Fibrosis Awareness Month activities were generously funded by 

News release issued by Irish Lung Fibrosis Association (ILFA)

Thursday September 25, 2025 – World Lung Day

 

Public urged to ‘know the signs of Lung Fibrosis’

World Lung Day 2025 highlights role of lungs in good health

1,000 cases of Lung Fibrosis diagnosed annually

 

Members of the public have been urged to ‘know the signs of Lung Fibrosis’, a life-limiting condition that affects thousands of people across Ireland.

The key signs of Lung Fibrosis are breathlessness, dry cough and fatigue. It’s a very serious and progressive condition affecting 5,000 people.

Today to mark World Lung Day the Irish Lung Fibrosis Association (ILFA) together with fellow organisation is hosting a briefing session, with free health checks, for TDs and Senators next to Leinster House.

It is a joint initiative together with the Asthma Society of Ireland, COPD Ireland, Alpha-1 Ireland and the Irish Thoracic Society.

The slogan for World Lung Day is ‘Healthy Lungs, Healthy Life’ to emphasise that lung health is integral to overall well-being – and to call for action across policy, healthcare and the environment. Together, the groups are advocating for:

Also known as Pulmonary Fibrosis the condition causes scarring of the lungs, making it progressively harder to breathe. Because symptoms can be subtle and mistaken for other conditions, diagnosis is often delayed.

ILFA CEO Maureen O’Donnell said: “On World Lung Day our partnership is urging the public, healthcare providers, and policymakers to work together to raise greater awareness.

In particular in Ireland we need to improve early diagnosis and improve disease management – as up to 1,000 new cases are diagnosed each year and this is increasing. By communicating the need to know the symptoms of the disease and seek medical advice early, we hope to make a meaningful difference in the lives of those living with Lung Fibrosis.”

Lung Fibrosis patient Charlie Campbell who has been living with the condition since he was diagnosed in 2023 described his experience.

“A dry cough began in Jan 2022 and by April 2022 the cough was incessant. After several months of cough and breathlessness just performing daily duties I sought medical attention, but a diagnosis wasn’t made until over a year later.”

The condition typically affects people over the age of 50, with the average patient being in their late 60s or early 70s at diagnosis. Men are more likely to be affected than women. While the exact cause is often unknown, risk factors include smoking, some occupational exposures and family history. It is a serious, life-limiting condition with no cure, but access to medications and care can slow disease progression.

The key symptoms of Lung Fibrosis include:

The Human Impact

Maureen O’Donnell continued: “Too often, people ignore the symptoms, putting them down to ageing or a lack of fitness. We want everyone to know the symptoms of the disease because with its severity, every minute counts.”

“For patients and their families, Lung Fibrosis brings huge challenges. Breathlessness can make everyday tasks like showering, shopping, or talking on the phone exhausting. The condition can lead to social isolation, loss of independence, and significant emotional strain for both patients and caregivers.”

Patient Ann Markey said: “Living with Lung Fibrosis means planning your life around your lungs. Things most people take for granted, like walking to the shops, planning days or nights out, keeping well and free from infection, become difficult.”

More information about World Lung Day 2025 can be found here: https://firsnet.org/world-lung-day-2025/

 

Media Contact

Ronan Cavanagh, Cavanagh Communications: (086) 317 9731.

 

The participating organisations