Urgent Call – Expressions of Interest – VPR Pilot Study

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

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:

• The causes of PF-related cough
• Available treatments and coping strategies
• Ongoing research in this field

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:

• Paula Ryan, Respiratory Advanced Nurse Practitioner, University Hospital Limerick
• Dr Anja Schwekert, & Dr Aoife Carolan, Researchers at Royal College of Surgeons, Dublin
• Professor Adam Byrne, Professor of Respiratory Immunology at UCD, a Conway Institute Senior Fellow and a Senior Fellow at Imperial College London
• And just back from his triumph at the Chicago Marathon, Patient Advocate, David Crosby!

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:

• Dr Aidan O’Brien, Respiratory Consultant, University Hospital Limerick with an update on lung fibrosis.
• Paul Ryan, Respiratory Advanced Nurse Practitioner, University Hospital Limerick will help patients and carers “live well” with lung fibrosis.
• Dr Anja Schwekert, & Dr Aoife Carolan, Researchers at Royal College of Surgeons, Dublin will present their outstanding research.
• And as always, we’ll be inspired with a patient story. This time featuring Noreen O’Carroll,

We look forward to welcoming you!

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