Lung Fibrosis Awareness Month Begins!

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

Join us on 12 August at 2 pm for a session on Advocacy where we’ll talk with Maureen O’Donnell and others about how ILFA continues to advocate on behalf of lung fibrosis patients, speaking up for patient rights and utilising the political system to improve care.

September is lung fibrosis awareness month and ILFA is going to be running a public campaign throughout the month to raise awareness and ensure that the historic progress we made in this year’s Government budget is continued and expanded in Budget 2026. We could really use your help.

This Let’s Talk session will help you understand more about our advocacy work and how you can help us ensure politicians provide the support we need to hold the HSE to account.

To register, contact info@ilfa.ie

The next online “Let’s Talk” session from the Irish Lung Fibrosis Association will take place on Tuesday 22nd July at 2pm on Zoom. This event is called “Let’s Talk Money and Budget Advice” and will be delivered by Gerard O’Brien, National Development Officer with the Money Advice and Budgeting Service (MABS @mabsinfo).

All are welcome to this event.

To register: https://us02web.zoom.us/meeting/register/9LcHECOTTcuWJkEgrYyo_A

Gentle Online Yoga for Lung Fibrosis Patients Coming In August

Take a healing pause with our therapeutic yoga sessions designed to support your lungs, reduce stress, and improve daily energy.

✔️ Gentle, guided movements
✔️ Breathwork tailored to lung support
✔️ Safe for all fitness levels – you just need to be able to get down to and up from the floor
✔️ No experience required

🕒 Live classes 14, 21, and 28th August | 💻 Join from home
👥 Community support, every step of the way

For more information, contact info@ilfa.ie

Note: All exercise should be conducted under the guidance of your medical team.

 

Have you heard about the Solar PV for Medically Vulnerable Scheme? This government-backed initiative provides free solar panel systems to households where someone relies on electrically powered medical equipment—helping ease the burden of energy costs while ensuring a more sustainable power supply.

Who Qualifies?

  1. “The scheme is open to households where a qualifying individual is dependent on equipment including (but not limited to) life protecting devices, assistive technologies to support independent living and medical equipment, or particularly vulnerable to disconnection during winter months for reasons of advanced age or physical, sensory, intellectual or mental health.” https://energyefficiency.ie/blog/fully-funded-solar-panels-for-medically-vulnerable-people/
  2. The dwelling must have been built and occupied before December 31, 2020, and be deemed structurally suitable for solar installation.

What’s Included?

The scheme is fully funded by the Sustainable Energy Authority of Ireland (SEAI). Qualifying households receive a 2 kWp solar PV system, which typically includes:

These systems can significantly reduce electricity bills—especially beneficial for those using high-energy medical devices daily.

How the Scheme Works

Although the scheme is funded by the Sustainable Energy Authority of Ireland (SEAI), it is delivered through Ireland’s main energy suppliers such as Electric Ireland, Bord Gáis Energy, Energia, and SSE Airtricity. If your energy provider hasn’t contacted you regarding the programme, you should contact them.

The process typically involves:

  1. An initial eligibility and suitability check
  2. A technical survey of the home
  3. Installation within approximately 6 to 12 weeks

Progress So Far

As of early 2025, the scheme has gained considerable momentum. Over 200 households had solar systems installed by the end of 2024, and the pace accelerated in 2025. By February, 83 installations were completed, with more than 100 in progress. The Department of Environment, Climate and Communications expects up to 1,440 homes to benefit by year’s end.

Why It Matters

For those dependent on medical equipment, a reliable energy source isn’t optional—it’s vital. This initiative not only improves quality of life through reduced energy bills and increased energy security, but also aligns with Ireland’s broader climate goals by expanding access to renewable power.

Contact Your Energy Provider Today

If your household includes someone on the Priority Services Register, you may be eligible for this life-enhancing support. Contact your energy provider to learn more or confirm eligibility.

FOR IMMEDIATE RELEASE
17 June 2025

Dublin, Ireland — The Irish Lung Fibrosis Association (ILFA), the national patient organisation for lung fibrosis, warmly welcomes the commencement of the Human Tissue Act 2024 today. This landmark legislation brings into effect a much‑anticipated “soft opt‑out” organ donation system, a milestone long supported by ILFA and the broader Irish Donor Network.

ILFA has campaigned relentlessly with the Irish Donor Network and others, urging the introduction of an opt‑out model designed to significantly bolster Ireland’s donor pool. With nearly 700 people currently awaiting organ transplants in Ireland—including many individuals living with progressive lung fibrosis—today’s enactment offers new hope and a second chance at life for patients and their families.

“We are delighted to see this long‑awaited legislation commence,” said Maureen O’Donnell, CEO of ILFA. “The soft opt‑out system better aligns Ireland with leading organ donation nations and marks a transformative shift in societal culture around donation. Our hope now is that the HSE, Department of Health, and transplant services promptly invest in public education, infrastructure, and staffing to reverse the dramatic decline in lung transplants and to ensure the success of this new approach.”

ILFA continues to echo calls from its fellow Donor Network members for:

“Talk to your family members and make your organ donation wishes known.” added O’Donnell. “We see examples every day of how organ donations can save lives.”

About ILFA

Founded in 2002, ILFA supports lung fibrosis patients and the larger caregiving community through advocacy, education, research and supports. The organisation advocates for patient-centred policy, timely access to treatment, and improvements across the transplant journey.

Notes

For media enquiries or further information:
Maureen O’Donnell, CEO

ILFA
Email: info@ilfa.ie | Phone: 086 871 5264