Look Ahead at ILFA’s Upcoming Events
We’ve hit the ground running in 2026 with new support groups and events meant to help you stay informed and be supported! Here are just a few of our upcoming activities along with how to sign up.
Support Groups:
- Virtual Patient Support Group – This group was established late last year with excellent response. For those who are far away from an in-person support group meeting, you can join us online for discussion and support. The next meeting is Wed 04/02 @ 3pm. Contact Gemma@ilfa.ie to register.
- Virtual Transplant Support Group – Are you on the transplant list or have you received a transplant? This support group is being established to provide patients with a virtual network of support. The first meeting will be Mon 09/02. Again, contact Gemma@ilfa.ie to register.
Webinars:
- Our first Let’s Talk session will be held on 17/02 at 2 pm. The subject is an important one, End of Life Care & Palliative Care and our speakers will be Bettina Korn, End of Life Programme Coordinator at St James Hospital and Dr Una Molloy, Advanced Nurse Practitioner at St Francis Hospice in Dublin. To register: https://us02web.zoom.us/meeting/register/bf_waX_-Qkqc_2s2bg2xsQ
- We’ll be holding a Virtual Patient Information Day on Tues 31/03 @ 2pm. These semi-annual webinars provide an overview of lung fibrosis and interesting discussions on a variety of related topics. We are delighted to welcome Dr. Peter Riddell, Consultant Respiratory Physician at the Mater University Hospital and Assistant Clinical Professor at University College Dublin, as keynote speaker. To register: https://us02web.zoom.us/webinar/register/WN_Sv9M3Q20SymViYgczgurWg
- Our second Let’s Talk session will be on Nutrition & Diet, living with Pulmonary Fibrosis Tues 07/04 @ 2pm To register: https://us02web.zoom.us/meeting/register/LnZq5tYZSUmb7L9rGmKgrQ
Other Activities:
- Would you like to help guide ILFA’s Fundraising work in 2026? Our first Fundraising Committee Meeting of the year will be Friday 06/02 @ 9am. Contact Gemma@ilfa.ie for more information.
- Are you a nurse in Ireland and a member of ANÁIL? ILFA will be attending the upcoming Respiratory Nurse Association of Ireland 12th National Conference, Thursday on 12/03 in Athlone. We hope to see you there!
Are you a healthcare professional specialising in respiratory diseases and hoping to understand more about Interstitial Lung Diseases (ILDs)? The the ITS/ILFA ILD Education Day is for you!
ILFA are delighted to once again partner with the Irish Thoracic Society for the annual Interstitial Lung Disease Multi-disciplinary Team and Clinical Update event on Friday, February 13th, 2026, where Dr Steven Nathan will deliver the 2026 Fergus Goodbody Memorial Lecture. The Terence Moran Memorial Trophy will also be awarded for the best case presentation.
ILFA is proud to support education for respiratory healthcare professionals in Ireland.
Register here: https://us02web.zoom.us/webinar/register/WN_q0Aan-cbQZ2IrP8cif5psA#/registration
About Steven Nathan:
Steven D. Nathan, MD, FCCP, is the medical director of Inova’s Advanced Lung Disease Program and Lung Transplant Program. He is also a professor of medicine at the University of Virginia.
Dr. Nathan is board certified in pulmonary diseases, critical care medicine and internal medicine. The author of more than 500 publications, Dr. Nathan is internationally recognized for his expertise in advanced lung diseases. He is co-editor of two books on idiopathic pulmonary fibrosis that provide pulmonologists and other healthcare workers with an up-to-date review of the background and advances in the field: Idiopathic Pulmonary Fibrosis and Guide to Clinical Management of Idiopathic Pulmonary Fibrosis. He also has written original research manuscripts, abstracts, reviews and book chapters. Dr. Nathan is a reviewer for multiple journals and is on the editorial board for the journal, Thorax. He has served on multiple committees, including U.S. Food and Drug Administration advisory boards as well as steering committees for clinical trials in IPF and pulmonary hypertension, where he has also served as chair.
Dr. Nathan is a member of several professional medical associations, including the American Thoracic Society, the American College of Chest Physicians, and the International Society for Heart and Lung Transplantation. He has delivered talks and been chairperson of numerous sessions at many national and international conferences.
For Immediate Release
Irish Lung Fibrosis Association Expresses Deep Disappointment at Continued Low Number of Lung Transplants in Ireland
Dublin, Ireland – The Irish Lung Fibrosis Association (ILFA) has today expressed its deep disappointment and concern at the continued low number of lung transplants being carried out in Ireland as communicated by the HSE in its preliminary transplant figures for 2025. Unlike other organs, lung transplantations have never significantly 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 nearly 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 this opportunity. 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.
our esteemed Chairman, Eddie Cassidy, will step down from his position after serving as ILFA Chair since 2018. Eddie also served as a dedicated Board member, charity Director, and as ILFA Treasurer over the years. Eddie said “It has been an honour and pleasure to serve on the Board and as Chair for this incredible organisation. I would like to sincerely thank my fellow Board members for their support, service, and dedication over the years. I am indebted to them for their expertise, talents, and guidance. Warmest thanks to the staff who have worked for ILFA, especially Gemma who was always available to help me in my various roles. Thanks to Maureen, Kelly, Anne, Denise, Lorna, and Joanne who worked for ILFA over the years and to the many stakeholders with whom I engaged. I am grateful to my family and friends who have always supported and encourged me, and to the patients whom I have met and who have become dear friends through our many encounters.
ILFA are delighted to have the opportunity to engage with the HSE in an exciting new project in 2026, conducting a virtual pulmonary rehabilitation (VPR) pilot for lung fibrosis patients as a means of assessing the effectiveness of this delivery model for future scaling across Ireland. We hope that nearly 100 lung fibrosis patients will have the opportunity to engage in the pilot – increasing their fitness, improving health outcomes, and providing a model that could possibly duplicated and scaled in future for all lung fibrosis patients in Ireland.
We’re looking for a study partner, but we’re on an extremely tight deadline. Submissions must be received no later than 9th January so that we can make a decision by the 16th of January. Can you help us get the word out?
Here is the Expression of Interest call – please share this post with anyone who you think might be able to help get the word out or who might be interested in conducting the study.
VPR Expression of Interest_Final
ILFA’s offices will be closed from 25th December, reopening 5th January 2025.
To everyone who has supported our work in 2025, thank you!
We look forward to seeing you in January!
Read our Latest Newsletter Here: ILFA Newsletter Winter 2025
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