Upcoming Patient Information Day – 21st Oct

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

ILFA will be providing lung health checks and getting the word out about the inequitable healthcare our patients face at Buswells  on the 25th of September 10 am-12 pm.  

We need your help! Here is a video from our CEO, Maureen O’Donnell with details: https://youtu.be/MbqlU9qKyEM

Between now and the 25th we need you to call or visit (don’t email) your TDs and Senators to demand they show their support for lung fibrosis patients in their constituency by attending the Buswells event. The event is being held in conjunction with the Irish Thoracic Society, the Asthma Society, COPD Ireland and Alpha-1. Politicians will receive important information that helps them champion the rights of lung fibrosis patients and so it’s vitally important they attend. As their constituents and as patients or people caring for patients living with lung fibrosis your story is incredibly powerful to them. They want to help us but they need a reason to prioritise this. You can be that reason.

We want all TD’s and Senators to attend, but there are a few in particular that absolutely must be there. These are senior leaders and the representatives of Health Committee in the Oireachtas and they are as follows:

Please contact only the politicians in your constituency.

Also you can watch our recent Let’s Talk Advocacy webinar to learn more about advocating for ILFA on an ongoing basis.

Thank you for your support!

Nationwide awareness drive on Lung Fibrosis for September

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.

The Irish Lung Fibrosis Association (ILFA) is running a public awareness campaign on the condition for September – as up to 1,000 new cases are diagnosed each year and this is increasing. However, early diagnosis can make a difference.

ILFA CEO Maureen O’Donnell said: “During Lung Fibrosis Awareness Month ILFA urges the public, healthcare providers, and policymakers to work together to raise awareness, improve early diagnosis and improve disease management.

“The campaign slogan is ‘Every Breath Matters, Know the Signs’. 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.”

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.

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.

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.  I hope our ‘Every Breath Matters, Know the Signs’ campaign reaches as many people as possible. More importantly, I hope there are people who get the medical care and support they need because of it.

“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.”

Maureen O’Donnell concluded: “Getting diagnosed is the first step. Then patients should be referred to one of Ireland’s eight specialist centres for treatment options. Patient organisations like ILFA, and family members are also vital in helping people to manage their condition. ILFA provides information, advocacy, research and a supportive community to patients and caregivers navigating this journey.”

The key symptoms of Lung Fibrosis include:

 

Today, 1st September, marks the first day of lung fibrosis awareness month and the start of ILFA’s campaign to raise awareness. “Every Breath Matters, Know the Signs” will be rolling out across the country in September. Thanks to Boehringer Ingelheim for funding our awareness raising activities.

First you’ll notice the press release that we sent out last week after meeting with Minister Jennifer Carroll MacNeill. That was picked up by two local radio stations and Raidió na Gaeltachta (fair play to Annette Cremin for getting the word out about lung fibrosis i nGaeilge!). Wicklow People featured a story on Lorcan McMahon and we received pickup from the Irish Daily Mail as well. Thanks to everyone who told their story in print and on the radio. If you’d like to tell your story too, please contact us (info@ilfa.ie) to volunteer.

This month our own Gemma O’Dowd and Dermot Rafferty will hit the airwaves on RTE Radio 1 and Lyric FM with 20 second radio spots. Additionally we have a special surprise coming in the third week (just before World Lung Day) where we’re hoping to get on the national news stage!

But it’s not all print, radio, and online media, we’re also getting the word out in person. On World Lung Day (25th of September) we’ll be in Dublin at Buswell’s in the morning hoping to raise awareness with politicians and staffers. Then in the afternoon we’ll be with the Central Bank on King Street in Dublin (in front of the Gaiety Theatre) raising much needed funds and awareness for lung fibrosis with our stationary cyclethon.  If you’re in Dublin, stop by!

It’s going to be a big month for lung fibrosis and we hope that you’ll help! For more information about what you can do to support Lung Fibrosis Awareness month, visit our dedicated page at https://ilfa.ie/lung-fibrosis-awareness-month/

Press Release Issued by the Irish Lung Fibrosis Association (ILFA)

Tuesday August 26, 2025

Lung Fibrosis Community meet Minister to highlight inadequate care

Awareness drive on Lung Fibrosis taking place during September

Life-limiting condition affects 5,000 people and numbers are rising

The Irish Lung Fibrosis Association  and members of the Lung Fibrosis community are this week meeting with the Minister for Health calling for a radical overhaul of services – including a national clinical programme, investment in community services and a registry of patients.

These issues will be raised with Minister Jennifer Carroll MacNeill on Tuesday, August 26 in advance of a nationwide Lung Fibrosis awareness drive for the month of September led by the Irish Lung Fibrosis Association (ILFA).

Lung Fibrosis is a serious, life-limiting and progressive disease, causing scarring of the lungs which makes breathing difficult – affecting approximately 5,000 people in Ireland.

Often patients need oxygen to assist breathing. Most commonly diagnosed in people over the age of 65, Lung Fibrosis numbers are rising with an estimated 1,000 new cases each year.

ILFA CEO Maureen O’Donnell said: “Despite being on the increase and a devastating disease that significantly shortens lifespans – patients experience long delays in diagnosis, fragmented care, and an inability to get the treatments and multidisciplinary services they need.

“For these reasons ILFA together with members of the Lung Fibrosis community are meeting with the Minister for Health. At the meeting we will present the solutions included in ILFA’s Equitable Care Strategy launched in June and a funding proposal from our Pre-budget Submission launched in July.

Lung Fibrosis patient Seán Ó Sé from Kerry has described how a lack of awareness delayed his diagnosis.

“When my breathing difficulties started six years ago, I did not know the challenges that lay ahead. It took 18 months to be diagnosed. Unfortunately, specialist care is limited to eight centres, most of which are in Dublin. I live in West Kerry and must travel a large distance to receive care – the cost of which is borne by me.“

September is Lung Fibrosis Awareness Month and ILFA will be running an awareness campaign under the slogan ‘Every Breath Matters – Know the Signs of Lung Fibrosis’. The campaign will culminate in events in Leinster House and Dublin city centre on World Lung Day (25th September).

Maureen O’Donnell said everyone over the age of 65 should know the signs including shortness of breath, low energy and a persistent dry cough. Anyone with these symptoms should visit their GP right away.

“We are calling for an end to Lung Fibrosis patients being forced to make impossible choices. Despite being severely ill patients are forced to travel long distances, at their own cost, to receive care they badly need and this is unacceptable.

“Patients shouldn’t have to choose between getting treatment and buying groceries. They shouldn’t have to ration their oxygen supply because they can’t afford the electricity bill.  We hear these stories every day from our community and it’s got to stop.”

The asks which ILFA will be raising with Minister are the following:

Media Contact

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

Note to Editor

Lung Fibrosis is progressive scarring of the lung which make it harder for oxygen to get into the blood, causing shortness of breath. It is a serious, life-limiting condition with no cure, but access to medications and care can slow disease progression.

Issued by the Irish Lung Fibrosis Association (ILFA)

Monday August 25, 2025

 

 

 

 

Have You Heard About the Health Age Friendly Homes Programme?

The programme’s ambition is to enable everyone to live longer healthier lives by keeping care close to home and expanding the range of health and social care services in the community. It is about providing a range of alternatives for older people who may otherwise transition into long term residential care prematurely. There are Local Healthy Age Friendly Homes Coordinators in all local authorities who will case manage a support package for each person referred, linking the supports from the variety of public, voluntary, private and community agencies in the area. The service is free of charge and available to anyone aged 65+ years

Some of the areas they provide information on include:

This service is free of charge and available to anyone aged 65+ years. It does not affect any current home help, medical card, pension, or other service being received.

Referrals can be submitted through the following webform  https://agefriendlyireland.ie/healthy-age-friendly-homes-programme/making-a-referral/

Alternatively, if you contact our National Office on 046 9248899, they will be happy to take the referral over the phone.

More information: HAFH Trifold Final

ILFA is Ireland’s representative body for lung fibrosis patients. For more than 20 years we have advocated on behalf of patients and the wider lung fibrosis community. We promote change, we challenge current practice, we speak up on behalf of our community, and we collaborate with other patient organisations, alliances, and networks.  Our ultimate goal is equitable healthcare.

Today, lung fibrosis patients are forced to fight a battle on two fronts – against the progression of their disease, and against an inequitable healthcare system that denies them access to the care they need. It doesn’t have to be this way. Providing lung fibrosis patients equitable care would give them a chance to live a longer and healthier life.

The 2025 budget, with its historic € 500,000 funding allocation for lung fibrosis, presented a unique opportunity to support our community. That funding will hopefully be actioned soon, and we have been in discussions with the Department of Health regarding the services our patients urgently need. It’s now critical that the foundational funding in Budget 2025 be expanded in Budget 2026.

ILFA is asking for:

  1. € 371,000 to the HSE (and associated headcount) for ongoing staffing and management of the Interstitial Lung Disease (ILD) patient registry established from 2025 funding.
  2. € 125,000 in funding to ILFA to provide a nurse line and expand the patient grant programme (established from 2025 funding in an SLA agreement with the HSE).
  3. € 6M to the HSE (and associated headcount) to expand community pulmonary rehabilitation access for ILD patients.
  4. € 3M To establish a tax rebate programme to ensure patients depending on oxygen are not forced to ration their supplies because of increased electricity costs.

The items detailed above (totaling just over €5 million) will provide stopgap funding while the Clinical Advisory Lead continues his investigation into equitable care. This funding expansion would certainly be a cost, but we believe the annual return will be approximately twice the cost of investment (in avoided hospital care from acute exacerbations).

Read our full pre-budget submission for a better understanding of the issues we advocate for and the funding required to achieve the outcomes we seek. Pre Budget Submission 2026-Final