Updated Directory of Services

For more information: Christmas Card FAQ Sheet A4

ILFA are delighted that our ILD Nurse-Led Telephone Adviceline is now live and taking your calls! The adviceline is a new national Freephone service available Monday to Friday, 10am to 3pm, offering specialist nursing advice and support for people living with interstitial lung disease and their families. When you call, you will speak directly with an experienced ILD nurse who can provide clear guidance on a new or existing diagnosis, medications and side effects, changes in symptoms, day-to-day self-management, and living well with lung fibrosis, as well as signposting you to relevant supports across Ireland. This free, confidential, non-emergency service complements your usual GP and hospital care, giving you a dedicated space to ask questions, talk through concerns, and feel more confident managing your condition.

If you are living with ILD or supporting someone who is, we encourage you to get in touch and access the support available to you.

To contact ILFA’s Nurse-Led Adviceline, call our Freephone number at 1 800 99 88 11.

Please note that the ILD Nurse Led Adviceline does not replace urgent medical care when needed. If this is an emergency, dial 999 or 112 immediately to connect with the emergency services.

ILFA would like to extend heartfelt thanks and gratitude to all who supported us in 2025 — our advocates,
fundraisers, corporate partners, members, volunteers, and everyone who helped support our mission.

Without your continued support we would not be able to provide the vital services, research, education and
advocacy for those affected by Lung Fibrosis.

For more information, read our DONOR REPORT 2025!

For Immediate Release

When Will the Organ Donation and Transplantation System in Ireland Meet Demand?

Dublin, Ireland – The Irish Lung Fibrosis Association (ILFA) recognises Organ Donation Awareness Week 2026 and the importance of organ donors and their families who make transplantation possible in Ireland.

At the heart of Ireland’s organ donation and transplant system are the donors and families who choose to give life to others, often in the most difficult of circumstances.

Organ donation is an immeasurable act of generosity, and it is deeply disappointing and concerning that despite the enactment of the Human Tissue Bill one year ago, transplantation remains below the European Union average and substantially below leading countries such as Spain. Lung transplantations, in particular, never recovered from their initial 58% decline during Covid-19. A situation that is having devastating consequences for patients living with advanced lung disease.

Between 2016 and 2020 Ireland performed, on average, 31 lung transplants per year. The highest number, 38, was performed 2019 when Ireland was one of the leading transplant countries per capita. In 2020 that number dropped to just 16 and except for a temporary increase in 2023 with 19 transplants performed, Ireland has inexplicably remained one of the worst performing countries with just 13 lung transplants in 2024 and 15 in 2025.

For many people with lung fibrosis and other life limiting conditions, transplantation is a life-saving intervention. Yet year after year, patients and their families are forced to endure prolonged waiting times, uncertainty, and in too many cases, the tragic reality that a suitable transplant does not arrive in time.

ILFA acknowledges the dedication and commitment of clinical teams working within the transplant system. However, the persistently low lung transplant numbers highlight systemic issues that must be urgently addressed, including donor availability, capacity constraints, and long-standing resource challenges within Ireland’s transplant infrastructure.

“Every delayed or missed transplant represents a life,” ILFA’s CEO, Maureen O’Donnell said. “Behind these numbers are real people who are running out of time. Patients with lung fibrosis often deteriorate rapidly, and without timely access to transplantation, their options become heartbreakingly limited.”

ILFA is calling on Government, the HSE, and all relevant stakeholders to prioritise lung transplantation as a matter of urgency. This includes sustained investment in transplant services, ongoing donor awareness campaigns, and transparent reporting and accountability around transplant activity and targets.

“It was encouraging to see the progress made in increasing organ donor awareness through the implementation of the Human Tissue Act last year. It’s a good start but there are approximately 600 people awaiting organ transplant, that’s far too many. Donors provide a life-saving gift under unbelievably difficult circumstances. We owe an enormous debt to them and to their families.  We must not waste their gift. Ireland has the expertise and the compassion to do better” O’Donnell said. “What is needed now is decisive action to ensure that patients who are suitable for transplantation are given a fair and timely chance at survival.”

ILFA remains committed to advocating on behalf of patients and families affected by lung fibrosis and will continue to work constructively with policymakers and healthcare leaders to push for meaningful change.

Ends

Media Contact:
Maureen O’Donnell: maureen@ilfa.ie

About ILFA
The Irish Lung Fibrosis Association supports patients and families affected by lung fibrosis through advocacy, education, and support, while campaigning for improved diagnosis, treatment, and access to life-saving services such as lung transplantation.

We are delighted to convene ILFA’s inaugural Patient Summit on the 24th of September 2026. We hope this will be the first of many such events and we’d love you to join us at the Ashling Hotel in Dublin (near Heuston Station) from 9:30-16:30 (registration from 9:00) on the 24th.

The event will be an opportunity for our community to engage with peers and hear from industry leaders in Respiratory Health on the latest advances in lung fibrosis care. Lunch will be provided and there will be ILFA staff on hand to ensure your comfort and safety.

If you would like to register for this free event, follow this link: https://forms.cloud.microsoft/e/iUeDDXyKG6

Would you like to volunteer during the summit? Please contact Kelly at info@ilfa.ie

Let’s Talk Virtual Pulmonary Rehabilitation Programme (VPR) for Patients

Monday 11 May 2026 @ 2pm

https://us02web.zoom.us/meeting/register/J6vTPwlCRJagOIu0YS8IsA

Let’s Talk Pulmonary Rehabilitation Programme (VPR) for Healthcare Professionals

Monday 12 May 2026 @ 1.30pm

https://us02web.zoom.us/meeting/register/ZCh61khdShC3zCs171DNYA

Let’s Talk Diet and Nutrition with Ciara Walsh

Wednesday 13 May 2026 @ 3pm

https://us02web.zoom.us/meeting/register/LnZq5tYZSUmb7L9rGmKgrQ

Would you like to learn more about ILFA’s VPR pilot programme? Led by the Irish Lung Fibrosis Association (ILFA) and funded by the HSE, this 9-month study will provide a structured virtual rehabilitation programme to patients with Idiopathic Pulmonary Fibrosis and other progressive fibrotic interstitial lung diseases.

There are two upcoming Let’s Talk sessions led by ILFA’s physiotherapist team. The first is geared toward providing information for patients on Monday 11th May at 2 pm and then a session on Tuesday the 12th of May at 1:30 pm specifically for Healthcare Professionals.

Let’s Talk Virtual Pulmonary Rehabilitation Programme (VPR) for Patients

Monday 11 May 2026 @ 2pm

Let’s Talk Pulmonary Rehabilitation Programme (VPR) for Healthcare Professionals

Monday 12 May 2026 @ 1.30pm

Now Open: Referrals for Virtual Pulmonary Rehabilitation (HSE-Funded Study)

Referrals are now open for a national pilot programme delivering virtual pulmonary rehabilitation to patients with lung fibrosis (pulmonary fibrosis including IPF) across Ireland.

Led by the Irish Lung Fibrosis Association (ILFA) and funded by the HSE, this 9-month study will provide a structured virtual programme to patients with Idiopathic Pulmonary Fibrosis and other progressive fibrotic interstitial lung diseases.

Healthcare professionals are invited to refer suitable patients via the referral form, now available on the ILFA website under “Our Work” or at this link (https://ilfa.ie/virtual-pulmonary-rehab-referral/)

Please note, only the following healthcare professionals (Consultant, Registrar, Respiratory ANP or CNS, Physiotherapist) may refer patients.

For queries, please contact VPR@ilfa.ie.

ILFA’s first patient information day of 2026 occurred on Tuesday, 31st March at 2pm. Our CEO, Maureen O’Donnell hosted the session. The following topics were discussed:

Professor Aidan O’Brien Respiratory Consultant at University of Limerick provided an update of pulmonary fibrosis.
Doctor Peter Riddell – Lung Transplant Physician at the Mater University Hospital provided an overview of lung transplants.
Maureen provided an overview of ILFA’s activities and services in 2026.
Elaine Craven – Respiratory Advanced Nurse Practitioner at Connolly Hospital discussed managing your medications.
Gerry Healy – wrapped up the session by sharing his experience with the disease

You can watch it here:

https://youtu.be/eqTpdpB04q4?si=SXwFHisvBtK6JjZ5

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