Our First 2025 Newsletter Is Here

Read our Latest Newsletter Here: Spring-Summer 2025

We are inviting all respiratory medical professionals to attend our Mental Health Training Day for healthcare professionals on 18th June 2025 from 9:30 am to 4:30 pm at the Pillar Centre in the Mater University Hospital. This engaging and inspiring event will give you and your colleagues a better understanding of the benefits of mental health and offer practical strategies that will help you care for seriously ill patients while minding your own wellbeing.

The interactive sessions, combining theory and practical exercises, have been developed by ILFA in collaboration with Dr. Elizabeth O’Brien, Principal Specialist Psychologist in Respiratory Medicine, Mater Misericordiae University Hospital. Key topics include: Understanding Mental Health Challenges, Communicating with Empathy, Caring for Yourself – a Mindfulness Based Support System, Caring for Your Colleagues – Mental Health First Aid Overview.

Speakers Include:

Dr. Elizabeth O’Brien, Principle Specialist Psychologist  – Mater Misericordiae University Hospital

Professor Winifred Ryan – Lead of the National Healthcare Communication Programme – HSE

Professor Gaye Cunnane – Consultant Rheumatologist and Recent Director of Health and Wellbeing – RCPI

Mr Donal Scanlon – Head of Mental Health First Aid Ireland

Email info@ilfa.ie to register!

ILFA are delighted to have contributed to this consequential report on the future of disease registries in Ireland.

“Patient registries are more than just electronic databases; they are tools to transform real-world clinical, social,
and patient-reported data into actionable insights. A registry is an organised system that collects standardised
data over time using observational methods to collect data for a defined population (e.g., by disease, condition,
or treatment). Registries can support research, public health, health care planning and delivery, policy decision making, and inform clinical practice, differing from electronic health records (EHRs) by focusing on longitudinal data for specific scientific or policy purposes rather than individual patient care.
Through statistical analysis, registries identify patterns in clinical, epidemiological, and social data over time,
guiding healthcare providers and policymakers in making informed decisions. As centralised repositories of
information on specific diseases, registries enable better understanding and management of health conditions at
a population level. Registries are crucial in demonstrating the real-world effectiveness of new treatments or
public health initiatives, facilitating healthcare planning and delivery, and enabling clinical trial access. Without
them, patient care and outcomes, research and development and our healthcare system suffer.
Ireland’s registries play a significant role in collecting and leveraging patient data for research, policy, and
practice. Many existing Irish registries have over a decade (some 20 years+) experience collecting, digitising, and
using data to inform research policy and practice as well as contributing data to international registries,
enhancing patient access to therapies, clinical trials and global evidence bases.

Read the full report here: https://cfri.ie/wp-content/uploads/2025/05/FoRT-Report-5-25.pdf

The next “Let’s Talk” event from the Irish Lung Fibrosis Association will take place on Monday 19th May at 2pm.

“Let’s Talk – Understanding the Role of Lung Inflammation During IPF’” will be delivered by Professor Adam Byrne, Professor of Respiratory Immunology at University College Dublin School of Medicine and will be followed by a Questions and Answers Session.

Please email info@ilfa.ie to register and to submit any questions you may have in advance.

ILFA has advocated on behalf of lung fibrosis patients and the greater lung fibrosis community for more than 20 years. On 11th June we will once again return to Leinster House, this time to brief members of Dáil Éireann using a report ILFA commissioned on the inequitable state of healthcare for lung fibrosis patients in Ireland with recommendations for improvement. This groundbreaking report was delivered by Prospectus Management Consultants, a leading research company in Ireland. 

As part of the report launch, we will be demanding the Government and the HSE live up to the promises they have made. Specifically:

  1. Release the 500,000 euros in funding allocated in Budget 2025 for lung fibrosis. That money should go toward a disease registry, pulmonary rehabilitation, grants for patients to offset the high cost of electricity and travel, and to hire a nurse to increase ILFA’s medical expertise.
  2. Staff the Clinical Pathway Advisor role (originally promised more than two years ago) so that work can begin on building a foundation for a Clinical Programme.
  3. Investigate the delays and service issues related to the oxygen contract changeover (originally due to be completed in November 2024 but still ongoing) and look into the dramatic decline in lung transplants in 2024 and 2025.

Please save the date and support our work. On launch day (11th June) there will be media attention. We ask that you share the news stories across your network of family and friends. In addition, we will publish the report on our website along with a “Contact Your TD” toolkit. Follow the instructions in the toolkit and write, call or visit your TD to demand that lung fibrosis patients receive the care they need. 

If you missed our Patient Information Day webinar on 30th April, you can watch it back on our YouTube Channel at the following link: https://youtu.be/wNLj1xUuuK8?si=3qK_eonCsdYl9XDr

Be sure to Like the video and Subscribe to our YouTube channel for all the latest videos!

There is a new study by the UCD School of Psychology on the mental health and well-being of people living with Idiopathic Pulmonary Fibrosis (IPF). The study is headed by Dr. Sonya Deschênes, Assistant Professor, Dr. Elizabeth O’Brien, Clinical Psychologist, and Alisa Oriol, MSc., UCD School of Psychology. Patients over the age of 18 with English fluency who have been diagnosed with IPF for longer than six months are invited to participate.

Currently, there is little research in Ireland on the psychological wellbeing of people with idiopathic pulmonary fibrosis (IPF). The study aims to explore the current state of mental health and wellbeing in people with IPF. It also wants to know how people with IPF in Ireland are supported by others, and what kind of social supports they need.

For more information and to join the study: https://tinyurl.com/4cmkfdc8

If you’re unable to view the video above, click here to watch back on YouTube.

Our next Patient Information Day will be 30th of April from 11 am to 1:15 pm online.

Our speakers will include:

Join us for this informative session by clicking on the registration link: https://us02web.zoom.us/webinar/register/WN_GElylspmQn68C0gpAL6OQQ

ILFA are delighted to announce a new online six week course we’ll be offering over the coming months to support your resilience. Lung fibrosis patients and those who support them are welcome to register their interest in an exciting new exploration of the building blocks of resilience through creative and mindful interventions. Each 90 minute session will feature a guest lecturer followed by facilitated group activities meant to enhance and embed the learning.

Topics include:

  1. Minding your mental health
  2. Supporting your breath
  3. Enhancing your creativity
  4. Practicing self-care
  5. Wisdom as we age
  6. Exercising compassion for ourselves and others

Funding for this course is generously provided by the Hospital Saturday Fund. If you are interested in attending, register your interest by emailing info@ilfa.ie or calling us at 086 871 5264.