News and Upcoming Events 



Would You Like To Become More Involved With ILFA?

Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA branch where you live.

You can decide what level of involvement you would like to have. If you are interested in getting more involved ILFA would like to hear from you.

You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ or by calling 086 871 5264


ILFA Patient Information Day

The next Patient Information Day will take place on Saturday 21st April at the Newpark Hotel, Co Kilkenny from 10am until 1pm. All are welcome to attend this free event and we hope you can join us to learn more about pulmonary fibrosis from the experts.

Our speakers will be;

 - Dr Killian Hurley - Respiratory Consultant at Beaumont Hospital

 - Paula Ryan - Advanced Nurse Practitioner in respiratory medicine at Limerick University Hospital

 - Irene Byrne - Senior Respiratory Physiotherapist at the Mater University Hospital and

 - Maria Love - Senior Medical Social Worker at the Mater University Hospital

Please call 086 871 5264 or email to register for this free event.


Visit to Aras an Uachtarain

Thank you to President Michael D Higgins and Sabina Higgins for inviting members of ILFA to a special St Patrick's Day reception at Aras an Uachtarain to honour patient organisations, healthcare professionals, families and individuals who have helped promote organ donation and transplantation. It was an honour, a privilege and a wonderful treat to meet the President and Sabina on Ireland's national day.

The ILFA delegates who attended the event were Eddie Cassidy (ILFA Chairman), Nicola Cassidy and Lynn Fox (ILFA committee members), and our special guests; Ann and Michael Kennedy, Pam and Liam Martin, and Edna and Ken Powell who have all fundraised for ILFA and whose names were drawn from a hat.

The President gave a beautiful and heartfelt speech highlighting the wonderful generosity of organ donors and their families at a time of great personal tragedy, and the wonderful gift of life they bestow to those in need of life saving transplants. He also encouraged everyone to have a conversation with their next of kin and let them know about their wishes to be an organ donor. Professor Jim Egan (Organ Donation and Transplant Ireland) also gave a speech acknowledging the great sacrifice of donors in order to give renewed life to transplant recipients. 

It was wonderful to see all those involved in organ donation and transplantation from across Ireland represented at the reception. We were treated to great music, song and dance, lovely refreshments, and the opportunity to meet friends and make new acquaintances. What an honour and a privilege to be so warmly welcomed by President Michael D Higgins and Sabina to their beautiful home. Mile Buiochas!

Image may contain: 5 people, people smiling, people standing and suit



The Fergus Goodbody Memorial Lecture

The 2018 Fergus Goodbody Memorial Lecture on Idiopathic Pulmonary Fibrosis took place on 14th March 2018 in collaboration with the Royal College of Physicians of Ireland, Kildare Street, Dublin. We are delighted to report that 170 healthcare professionals registered to attend the event.

Dr Diarmuid O'Shea, Registrar of the College, chaired the event, welcomed the audience and introduced the prestigious guest speakers who are leaders in respiratory medicine.
- Professor Toby Maher from the Royal Brompton Hospital, London spoke on 'Developments in IPF'.
- Anne-Marie Russell, Clinical Doctoral Research Fellow at the National Heart and Lung Institute at Imperial College London spoke on 'Palliative care and end of life management for IPF patients'.
- Professor Edward McKone of St Vincent's University Hospital gave an update on the treatment of Cystic Fibrosis.
- Professor Anthony O'Regan, University College Hospital Galway delivered a lecture entitled 'Alphabet soup' and gave a summary of some of the different types of Interstitial Lung Diseases.

This important educational event for healthcare professionals was a great success thanks to our superb speakers. Thanks to Boehringer Ingelheim Ltd. for supporting this educational activity.

Pictured are Eddie Cassidy (ILFA Chairman), Nicky Goodbody (ILFA Director and co-founder), Professor Toby Maher, Ms Anne-Marie Russell, Professor Anthony O'Regan, Professor Jim Egan and Professor Edward McKone.


Irish Donor Network Calls for the Introduction of an Opt-Out Organ Donation System

The Irish Donor Network (IDN) represents a group of seven national patient orrganisations; Alpha One Ireland, Cystic Fibrosis Ireland, COPD Support Ireland, Cystinois Ireland, The Irish Heart & Lung Transplant Association, the Pulmoary Hypertension Association of Ireland and ILFA, who are concerned with organ donation and transplantation in Ireland.

The IDN prepared a joint submission to the Public Consultation on the Human Tissue Bill 2017 (incorporating organ donation) to confirm its support for Government’s introduction of soft opt-out consent to organ donation. 

Click here to read the IDN's submission to the Public Consultatiion on the Human Tissue Bill 2017.

Click here to read the IDN's information leaflet



The Denise Cassidy Memorial Prize 2017

"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around" - Leo Buscaglia.

The Denise Cassidy Memorial Award recognises and celebrates an act of kindness shown by a healthcare worker to a lung fibrosis patient. In 2017, ILFA members were invited to nominate a person who showed them or their loved one a special kindness. ILFA was delighted to receive so many nominations and learn about the great work of our healthcare staff. Thank you to everyone who nominated their healthcare hero. 

Olivia Mulvaney, staff nurse from Cavan General Hospital, was chosen as the worthy winner of the 2017 Denise Cassidy Memorial Prize. Olivia was presented with a specially commissioned piece of Dublin Crystal and a framed certificate for Excellence in Patient Care by Eddie Cassidy (ILFA Chairman) in Dublin on Monday 29th January.

Everyone nominated for the award also received a certificate for Excellent in Patient Care.  

The photo shows Eddie Cassidy with Olivia Mulvaney and her husband Tommy. 

Click here to read more.


Tip of the week

Plan in advance
When organising a trip away, it is important to plan your journey and stay as far in advance as possible. If travelling by air, rail or coach, let the travel company know about your medical needs (for example, oxygen equipment, extra power sockets, wheelchair, seat close to the bathroom). Hotels can provide larger rooms or access rooms for people with medical needs. Ask for a room that has a walk in shower rather than a bath if this would be easier for you, and a nearby lift. The staff will do everything they can to make your stay as comfortable and safe as possible

For more useful information please see here to read more tips from 2018. 


Inspirational Quote of the Week

"However difficult life may seem, there is always something you can do and succeed at."   Stephen Hawking

Click here to read more inspirational quotes featured in 2018. 


Happy New Year from ILFA

Thank you for your support and goodwill for our charity throughout 2017. We are looking forward to carrying on our advocacy work in 2018, to strive to raise awareness about IPF and to continue to support patients and families affected by this condition. The ILFA Committee would like to wish you and your family a happy, peaceful and healthy new year.


2017 - A Year in Review

2017 was a year of many different emotions for everyone at ILFA. Our esteemed Chairman of 15 years, Terence Moran, passed away suddenly in August and we continue to experience an enormous sense of loss. Terence had guided us expertly from 2002 to 2017 and was excited to mark ILFA Ireland's 15th year anniversary with the production of our special edition magazine. The 'ILFA 15' magazine was launched during IPF World and celebrates the advances in IPF care since ILFA was founded. The magazine is dedicated to Terence Moran's memory.

2017 was an incredibly busy year for ILFA. Thank you to all of you for your support. We are hugely grateful all our amazing fundraisers, supporters, donors, ambassadors and patient champions whose enthusiasm, determination and dedication have helped ILFA to continue to support patients and families affected by lung fibrosis. Our fundraisers hard work has enabled ILFA to provide free educational materials, and exercise and practical resources to patients and healthcare professionals in hospitals and hospices around the country. 

Read more here


ILFA Christmas cards

Thanks to everyone who supported the 2017 ILFA Christmas Card Campaign and helped raise awareness of lung fibrosis and ILFA.


ILFA New Year Swim

ILFA's annual swim will take place on 1st January 2018 at 12.30 pm at Sandycove Pier, Dublin.

We will adjourn afterwards to FitzGerald's Pub (11 Sandycove Road, Dún Laoghaire) for hot soup and mince pies.

If you feel like taking the plunge, it would be a very healthy way to start the New Year, We would be delighted to see you and your supporters taking part! Please call 086 871 5264 for more information and a fundraising pack.


Thank you Nicky  

Nicky Goodbody, who set up ILFA with her good friends Terence Moran, Marie Sheridan and Professor Jim Egan in 2002, stepped down from the ILFA committee this week, after 15 years voluntary service.

Prof Jim Egan and Eddie Cassidy thanked Nicky for all her hard work and commitment to the charity over the years, and presented her with a bouquet of flowers and a special gift from her fellow committee members, as a token of everyone's deep appreciation.

We all join in wishing Nicky every happiness for the future.



ILFA 15 - special edition magazine is launched

2017 is a landmark year for ILFA as this year the charity reached our 15th anniversary! The idea for a special edition magazine, ILFA 15, started in April 2017 and the project offered an exciting opportunity to gather stories and reflect on ILFA's milestones and the advances in lung fibrosis care.

ILFA invited people from all over Ireland and beyond to share their experiences and personal perspectives with us.

ILFA 15 features articles from patients, doctors, nurses, allied healthcare professionals, clergy, researchers, patrons, professional respiratory bodies including the Irish Thoracic Society and The European Lung Foundation, volunteers, family members, fundraisers and support group members. The end result is superb and a credit to all the writers involved.

Click here to read ILFA 15 online. We hope you will enjoy reading ILFA 15.

To request a hard-copy, please email or call 086 871 5264 

The photo shows some of the ILFA committee at the ILFA 15 magazne launch, Lynn Fox, Gemma O'Dowd, Prof Jim Egan and Nicola Cassidy.


ILFA supports a move to an Opt-out Organ Donation System

ILFA supports the introduction of a soft opt-out organ donation system in Ireland. A lung transplant is the only effective treatment for Idiopathic Pulmonary Fibrosis.
Over 700 people are currently on the transplant waiting list to receive new lung(s), heart, kidneys, and pancreas. Moving to a soft opt-out consent system could make a real difference. ILFA made a submission to the Public Health Consultation on the Human Tissue Bill 2017 to spport the proposed change to a soft opt-out system of consent for organ donation.

Please click the link and sign the electronic petition to show your support for this vital life-saving legislation.


Tip of the week 2017

Be prepared
With all the Christmas preparations in full swing, don't forget to renew your medication prescriptions early and order your oxygen supplies.
Don't leave these important tasks to the last minute!

Click here to read to read our tips for 2017


Inspirational Quote of the Week

"In order to succeed, we must first believe we can." Nikos Kazantzakis

Click here to read the Inspirational Quotes for 2017  


Autumn ILFA Patient Information Day

The next ILFA Patient Information Day will take place at the Crowne Plaza Hotel, Northwood, Santry, Dublin on Saturday 21st October from 10m to 1pm.

The speakers will include;

  • Professor Anhony O'Regan, respiratory consultant, Galway University Hospital
  • Anne-Marie Russell, respiratory nurse specialist, Royal Brompton Hospital, London
  • Irene Byrne, respiratory physiotherapist, Mater University Hospital
  • Ciaran Heatley, respiratory physiologist, Mater University Hospital
  • Patient mpower

We hope you can join us to learn more about pulmonary fibrosis. All are welcome to this free event.

Please call 086 871 5264 to register.


Sad news

The ILFA committee is deeply saddened to let you know that our esteemed Chairman of 15 years, Terence Moran, has passed away.

Thank you to everyone who has sent messages of condolence. We have been touched by your kind words, and the warmth, respect and appreciation expressed for our dear friend.

Please remember Terence and his family in your prayers. 


Autumn Newsletter

ILFA's Autumn Newsletter is now available!

Click here to read the newsletter online.

If you would like to be added to ILFA's mailing list and receive our newsletter by post, please call 086 871 5264 or email



Patient Information Day Videos

The first ILFA Patient Information Day of 2017 took place in Sligo on April 22nd, 2017. Three of the presentations were recorded and can be viewed by clicking on the links below. 
Sincere thanks to Tara Hannon - respiratory physiotherapist at Galway University Hospital, Lynn Fox - respiratory nurse specialist at the Mater Misericordiae University Hospital and Noreen O'Carroll - IPF patient, for agreeing to share their presentations online and on social media. We hope you find the videos useful.





ILFA Supporters Walk the Camino

"Normally the 10k mini marathon in June is enough of a challenge for us, but this year we (Ann Kennedy and daughter Fiona) decided to bring our ILFA support to Northern Spain where we did the last leg of the Camino de Frances, 80km over 3 days walking

Despite the heat and some unforgiving hills, we managed it with no problems. The route was amazing with plenty of beautiful cafes and restaurants along the way ensuring we never got too dehydrated! We met many other pilgrims along the way and finished Day 3 with the Pilgrim Mass in the impressive Cathedral of Santiago de Compostela.

We arrived back into Dublin the day before the Women's Mini Marathon and Ann finished off her week of walking in style by completing the10k mini marathon with her other daughters, Marianne and Deirdre."

Report by Fiona Kennedy



Congratulations and thanks to Professor Jim Egan 

Congratulations to Professor Jim Egan from the Mater Hospital in Dublin who successfully completed the Wicklow 100 cycle challenge on Sunday 11th June in aid of ILFA.

If you would like to sponsor Professor Egan, you can donate securely online to ILFA via the following link.



VHI Women's Mini-Marathon 2017

Well done and thank you to all the ladies of Team ILFA 2017!!!

More photos and a report of the day will follow ...





Please support Professor Jim Egan's Wicklow 100 Cycle in aid of ILFA

Professor Jim Egan from the Mater Misericordiae University Hospital in Dublin has signed up to take part in the gruelling Wicklow 100 cycling challenge to raise funds for ILFA on June 11th.

You can sponsor Professor Egan online at the following link:

Please help Prof Egan reach and surpass his fundraising target. Remember every little helps and will go a long way to supporting those affected by lung fibrosis.

Go Prof Go!!!



New ILFA leaflet on Managing Breathlessness

ILFA is pleased to announce the launch of our new leaflet entitled 'Managing Breathlessness - Advice for Lung Fibrosis Patients. Click here to read the leaflet online.

The leaflet accompanies our hand held fans that are used to help relieve breathlessness. Research suggests that using a hand-held fan to blow air across the nose and mouth can help reduce the sensation of breathlessness for patients with breathing difficulties.

We would love your feedback on the fan and ask that you fill out a short survey after using it for a week or two. The survey is available in paper form or you can click the link to answer the survey online.

ILFA's new hand-held fans are now available for patients, respiratory nurses and physiotherapists to order free of charge. Call ILFA on 086 871 5264 or email to order a hand-held fan and leaflet.



ILFA newsletter Spring 2017

Click here to read the latest newsletter from ILFA.

If you would like to be added to ILFA's mailing list and receive a newsletter by post, please register here.




The Denise Cassidy Memorial Prize 2017

Would you like to honour your lung fibrosis healthcare hero?

"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around"  -  Leo Buscaglia

ILFA is excited to announce the 2017 Denise Cassidy Memorial Prize for excellence in healthcare. This award recognises and celebrates the kindness, compassion and humanity of a hospital healthcare worker to a lung fibrosis patient or their family. Patients and carers are invited to nominate a person who showed you or your loved one a special act of kindness that helped you cope with your illness better.

Please fill out the nomination form below and tell us why your healthcare hero deserves to be honoured. You can nominate a doctor, nurse, physiotherapist, social worker, counsellor, dietician, pharmacist, healthcare assistant, member of the chaplaincy team, clerical worker, catering or cleaning staff - in fact anyone who works in a hospital. Everyone who is nominated for the award will receive a certificate of excellence and the overall winner will receive a special commemorative Dublin crystal award.

Click here to read more about this article.

 Click here to download the nomination form.


The Fergus Goodbody Memorial Lecture 2017

The Fergus Goodbody Memorial Lecture for healthcare professionals took place in Dublin on 14 February 2017 and was delivered by Professor Jurgen Behr from Munich. Dr Emmet McGrath (St Vincent’s University Hospital, Dublin) and Professor Jurgen Behr gave two superb evidence-based medical lectures on interstitial lung disease (ILD) and idiopathic pulmonary fibrosis (IPF). The video of their presentations can be viewed here. 

Spring Patient Information Day

The Spring ILFA Patient Information Day will take place on Saturday 22nd April from 10am to 1pm at the Clayton Hotel, Clarion Road, Sligo.

Speakers will include
  • Dr Emmet McGrath - Respiratory Consultant, St Vincent's University Hospital, Dublin
  • Tara Hannon - Respiratory Physiotherapist, University College Hospital, Galway
  • Lynn Fox - Respiratory Nurse Specialist, Mater University Hospital, Dublin
  • Vivienne Vize and Zita Lawlor - Lung Transplant Cooordinators, Mater University Hospital, Dublin

All are welcome to this free event to learn more about lung fibrosis. 

For more information and to register for free, please contact ILFA on 086 871 5264 or email



Would you like to test a new app developed to help people with lung fibrosis?

This app is an electronic health diary which has been developed by patientMpower Ltd., an Irish company. patientMpower want to find out if people with lung fibrosis find this app useful and are looking for volunteers to take part in a survey. This information will be used to refine the design of the app to make it easier to use.

If you take part, you would use the app for about a month and then answer a questionnaire to give your feedback. In this survey, you can, if you wish, measure breathing tests at home using a small spirometer which will record the breathing test information directly in the app.

The patientMpower app works on any smartphone or tablet device (like an iPad). The idea is that you will use your mobile phone to keep a diary of symptoms and other factors related to your lung health. For example, you can keep track of the number of steps you take each day or your level of breathlessness. If you use the spirometer as part of this survey, the breathing test information will be recorded. The app can also be used as a reminder to take your medicines each day.

When attending clinic appointments, it may be useful to have this type of information to hand so that you can tell the doctor or nurse about issues that may have been troubling you.

The good news is that it is all free and if you like the patientMpower app you can keep using it for as long as you want. So if you have a smartphone or iPad-type device and would like to take part in this survey please contact the Irish Lung Fibrosis Association at 086 871 5264 or e-mail for an information pack. 


Hand held fans

Breathlessness is a common and distressing symptom for patients wih lung fibrosis that can impact on quality of life and prevent patients carrying out their daily activities. It is important for patients to be able to manage their breathlessness.

Research suggests that using a hand-held fan to blow air across the nose and mouth can help reduce the sensation of breathlessness for patients with breathing difficulties.

ILFA's new hand-held fans are now available for patients, respiratory nurses and physiotherapists to order free of charge.
We would love your feedback and ask that you fill out a short survey after using the fan. The survey is available in paper form or you can click the link to answer the survey online.
Call ILFA on 086 871 5264 or email to order a hand-held fan.



ILFA Patient Charter wins a national award for Plain English

ILFA is delighted to announce that the National Patient Charter for Idiopathic Pulmonary Fibrosis won a Plain English Award on 9th Februaury at a ceremony in the President's Hall at the Law Society in Dublin. The charter was the winner of the 'Health - Patient Information Leaflets' category.

Nicola Cassidy (ILFA Director) attended the ceremony along with Matt Cullen from Dublin and Anne Casey from Cork who represented patients and carers, who are central to the charter. Everyone at ILFA is thrilled with the win and the glowing compliments that the charter received!!!

Thank you to the National Adult Literacy Agency and the sponsors Mason, Hayes and Curran for a wonderful time at the awards ceremony on 9th February.


The Fergus Goodbody Memorial Lecture

The Fergus Goodbody Memorial Lecture took place on 14th February 2017 at the Royal College of Surgeons in Dublin. It was a great success and healthcare professionals from all over Ireland attended the event.

Professor Jim Egan (Mater Misericordiae University Hospital) chaired the event and the invited speakers; Dr Emmet McGrath (St Vincent's University Hospital) and Professor Jurgen Behr from Munich delivered two fantastic state-of-the-art lectures on interstitial lung disease and idiopathic pulmonary fibrosis.

Thank you to everyone who supported this important and valable educational event.

The photo shows Professor Jim Egan, Dr Emmet McGrath, Professor Jurgen Behr and Terence Moran (ILFA Chairman).


Advancing in IPF Research (AIR)

The 6th AIR meeting took place in Vienna, Austria on 18th and 19th of November and brought together almost 300 respiratory healthcare professionals from across Europe. This unique meeting focussed on recent developments in interstitial lung disease (ILD) and idiopathic pulmonary fibrosis (IPF) and some of the world’s leading experts in this field shared their insights. Professor Jim Egan and Nicola Cassidy from ILFA were invited to speak at this prestigous conference.

Click here for a report on the highlights of the 2016 AIR presentations.


Happy New Year

Happy New Year everyone! The ILFA committee would like to wish you a happy, healthy, and prosperous 2017!

2017 is a milestone year for ILFA as we celebrate our 15th year anniversary! We look forward to working with you to continue to raise awareness and support patients and families affected by lung fibrosis.


ILFA Christmas Swin 2016 

The annual ILFA Swim took place on St Stephen's Day. It was a beautiful sunny day, with a lovely calm sea and the event was well attended by a lot of loyal suporters. 

Ten swimmers bravely participated. First in was Honora Ni Chrioghain, followed by Chloe Meehan and Colin Ireland.  Next in was Professor Jim Egan, whose swim was accompanied by great cheers. Later arrived Giles Keane, all the way from Brussels. He was followed by Christopher and Colin Lock, who were supported by Claire Tunissen and her lovely dog Lottie. Last but certainly not least were Michael Darragh Macauley - ILFA Exercise Ambassador - and his cousin Ken Powell and brother in law John Sheridan. They were cheered on by Edna Powell, and Margaret, Rebecca, Ciara and Daniel Sheridan. 

Thanks to Edna for providing a box of Heroes later at Eagles House, where the group warmed up. The event was a great success, with Giles Bailey shaking the ILFA bucket once more, and it raised around €650. Well done everyone!



ILFA Christmas cards

Thank you to everyone who supported ILFA's Christmas card campaign and helped raise awareness of lung fibrosis during the festive season.



ILFA Winter Newsletter is now available

Click here to read the 2016 ILFA Winter Newsletter.

If you would like to receive the ILFA newsletter by post, please call ILFA on 086 871 5264 or click here to register online 


ILFA Christmas Jumper Lunch 

The Dublin Support Group had a 'Christmas Jumper' Lunch at the Gresham Hotel, O'Connell Street, Dublin on Tuesday 6th December.

Thanks to Pam Martin for organising the festive get-together. Everyone had a great time.


The Midlands Support Group held their annual Christmas Lunch in Tullamore Co Offaly early in December.








Radio interview with Near FM

Thank you to Near FM's Lifeline programme for raising awareness of IPF on the airwaves on 29th November.

Dermot King and Nicola Cassidy received a very warm welcome from Mark Finnegan, Debbie McMahon and their colleague George Mulcahy.

Debbie interviewed Dermot and Nicola and asked about the symptoms of IPF, how the condition is diagnosed, treatment options, the importance of exercise and managing the condition.

Click here to listen to the podcast.



2016 Irish Healthcare Award for ILFA and partners

The 2015 'Love Your Lungs' campaign organised by Roche Products Ireland and Edelman in association with ILFA, COPD Support Ireland and the Asthma Society won the 2016 Irish Healthcare Award for Best Pharmaceutical Educational Project on 10th November.

Three inspiring patient videos were produced and a social media campaign was organised to encouage everyone to 'Love Your Lungs' and seek medical help if suffering from respiratory symptoms.

The prestigous Irish Healthcare Awards ceremony took place in Dublin on 10th November. ILFA was represented by Dolores Williams - star of the ILFA 'Love Your Lungs' video, and Nicola Cassidy and they were joined by our friends Damien Peelo and Erika White from COPD Support Ireland, Averil Power from the Asthma Society and members of the team at Roche Ireland and Edelman. ILFA is thrilled with the win !!!!!!!

Thank you to Roche Ireland and Edelman for organising and supporting this important lung health awareness campaign.




Autumn Patient Information Day

Thank you to everyone who attended the ILFA Patient Information Day at the Crowne Plaza Hotel in Santry, Dublin on Saturday 5th November.

Sincere thanks to our speakers; Dr Kate O'Reilly (Respiratory Consultant), Lynn Fox (Respiratory Nurse Specialist), Petra Grehan (Respiratory Physiotherapist), Professor Jim Egan (Respiratory Consultant) and Eamonn Costello (Patient MPower).

Thank you also to the attendees, volunteers, and oxygen company representatives for making the event a great success.



Ireland AM interview

Thank you to Ireland AM for a great interview with ILFA's Exercise Ambassador and GAA star Michael Darragh Macauley and his aunt Edna Powell, who described their family's personal expeerience of IPF and the importance of organ donation and lung transplantation.

Michael Darragh and Edna praised the staff at the National Heart and Lung Transplant Unit at the Mater Misericordiae Unversity Hospital for their tremendous work caring for patients.

Click here to watch the clip on TV3 player.

Well done Edna and Michael Darragh!



ILFA Service of Prayer and Reflection

Thank you to everyone who came along to the ILFA Service of Prayer and Reflection at Gort Muire, Balinteer on Saturday.

85 people attended and helped make the service a very special occassion.

ILFA is especially grateful to the clergy - the Reverend Vanessa Wyse Jackson (Rathgar Methodist Church), the Reverend Martin Kilmurray O.Carm. (Gort Muire) and the Reverend Charles Mullen (St Patrick's Cathedral), and to the readers, musicians and candle lighters for taking part in the special service.

We are also very thankful to everyone who brought along cakes and biscuits for the refreshments afterwards.


ILFA Pre-budget Submission

The 2017 Budget will be announced on Tuesday 12th October. ILFA made a pre-budget submission to Ministers Simon Harris, Finian McGrath and Pascal Donohoe.

Please click the link to read more.



Launch of 'Fight IPF'

On Monday 26th September, three new patient videos with Bob, Noreen and Pam were launched to help patients "Fight IPF".

The videos are helping to raise awareness and have been very well received. See the videos at

Please click the link to read the press release that accompanied the launch.



IPF World Week

To mark IPF World Week, ILFA has produced two short videos featuring Dermot King and Finian McGrath T.D. Minister of State, Social Protection, Justice and Health with special responsibility for Disabilities. 


The first video is called "Living with IPF" and Dermot describes aspects of his daily routine and the things that hlp him manage his lung condition.



The second video is called "Raising awareness of IPF" and captures the time Dermot spent with Minister Finian McGrath in order to share his story about the challenges of living with IPF.




ILFA Newsletter for Autumn

The Autumn newsletter is now available.

Please click here to read the newsletter online.  If you would like to receive the ILFA newsletter by post, please call ILFA on 086 871 5264 or click here to register online


IPF World Week will take place from 17th to 25th September 2016

This initiative started in 2012 and unites IPF patient associations, healthcare staff and industry and helps to raise awareness of IPF. Each year approximately 35,000 patients in Europe are newly diagnosed with IPF and this figure is expected to increase in the future.

Some of the hospitals around Ireland will host information stands during IPF World Week. If you would like to help raise awareness among your friends and local community why not;

• tell someone you know about IPF,

• 'like' and 'share' ILFA's posts and tweets on Facebook and Twitter if you use social media,

• hold a coffee morning to raise awareness.

Please contact ILFA by emailing or calling 086 871 5264 if you would like more information.




The 19th International Colloquium on Lung and Airway Fibrosis is taking place in Dublin Castle, Ireland from the 24th to 28th September 2016.

ILFA looks forward to hosting an information stand at this prestigous event and to welcoming the world's leading scientists, researchers and clinicians to Dublin



ILD Interdisciplinary National Network Conference

The ILD Interdisciplinary National Network’s Inaugural Conference will be he held 9-10th October 2016 at the Hyatt Regency Hotel in Birmingham, UK.~

ILD-INN Conference 2016 is a two day event packed with interactive workshops, networking sessions, and discussions promising to be informative, inspirational and engaging. 

The ILD-INN conference will offer a broad and inclusive range of talks on many of the interstitial lung diseases including idiopathic pulmonary fibrosis.

Click here for more informataion and to register


2016 ILFA Service of Prayer and Reflection

The ILFA Ecumenical Service of Prayer and Reflection will take place on Saturday 15th October at 3pm in the Gort Muire Chapel, Balinteer, Dublin 14 (near to M50, Dundrum Shopping Centre, Balally luas stop). All are welcome.
A special candle lighting ceremony will take place to remember lung fibrosis patients who have passed away. If you would like your loved one remembered at the ceremony, please contact ILFA on 086 871 5264 or email by the 16th September.




patientMpower tool for people with lung conditions

patientMpower, a digital health company based in Dublin is developing a tool for people with lung conditions to record information on their symptoms, breathlessness, use of medicines and other issues related to their lung health.

The information will be recorded on your smartphone or other device (for example, iPad or Android tablet). Collecting this information on a regular basis might be useful in helping people and their medical teams to better manage their lung health.

patientMpower is looking for volunteers to try out the first version of this tool so that we can get your feedback and improve it. If you are interested in trying out this new tool now please contact Gemma at ILFA on 086 871 5264 or patientMpower on 01 903 8558 or email for further information.

Eamonn and Kerrill from patientMpower visited the Dublin Support Group on 2nd August to explain how the IPF app works for msart phones and tablets.

There was great enthusiasim for the app and we look forward to hearing how he volunteers testing the prduct get on.



Love Your Lungs



 The 2016 Pat Casey Memorial Cycle

Family and friends of Pat Casey (RIP) are organising a memorial cycle in Pat's honour to raise funds for ILFA and Cork University Hospital. Pat was a dedicated fundraiser for ILFA and a huge support and inspiration to others with IPF.

To celebrate Pat's life and to help raise funds, a cycle from Cork to Limerick and back to Cork will take place on Saturday 10th and Sunday 11th September 2016.
For more information please call Anne on 087 985 4587 or Brian on 086 088 1064 or emal for more information.


Written Declaration 26/2016 on idiopathic pulmonary fibrosis

Monday 11th July 2016 will be remembered in the history books as an historic day for IPF!
In 11th July the Written Declaration on IPF was signed by 379 Members of the European Parliament. The Written Declaration is based on the EU Patient Charter and its successful adoption will send a strong message to the European Parliament and the national governments, and will help raise awareness of IPF among the EU institutions.
Congratulations to the EU-Idiopathic Pulmonary Fibrosis and Related Diseases Federation (EU-IPFF), the healthcare professionals on EU-IPFF scientific advisory board and all the national patient organisations who worked so hard to ensure the success of the Written Declaration 26/2016 on idiopathic pulmonary fibrosis.

Thank you to all the MEPs from Ireland and across the EU who supported the Written Declaration 26/2016 on idiopathic pulmonary fibrosis. We are so greateful for your support!


Thank you to the McSkean Family, Castleshane, Co Monaghan 

On 14th May, Patrick and Teresa McSkeane from Castleshane, Co Monaghan were the guests of honour at a party organised by their children to celebrate their 40th wedding anniversary. The party was held in Club Derrynoose and a great night of fun was had by all. Patrick, Teresa and their children Kevin, Patrick Jnr., Malachy, Barry, Eugene and Annie Frances kindly asked for donations to ILFA in lieu of gifts and the fantastic sum of €1600 was raised thanks to the wonderful generosity of their family and friends.

Eddie and Nicola Cassidy from ILFA travelled to Castleblaney on 12th July to meet the McSkeane family for a cheque presentation and to pass on ILFA's appreciation for their kindness.


Brainstorming Session

Huge thanks to everyone who attended ILFA's Brainstorming Session on Saturday 18th June.

ILFA invited a small number of patients, carers, healthcare professionals and representatives from pharmaceutical and oxygen companies to attend a 'Word Café' style meeting' We discussed ideas on how to progress the 6 key areas described in the National Patient Charter.

The event was a great success and we are grateful to everyone for their valuable contributions.



Mini-marathon 2016 - Thank you ladies !

Thank you to everyone who took part in the VHI Women's Mini-Marathon on Monday 6th June and helped raise awareness and funds for ILFA.

This year, team ILFA was made up of over 40 ladies from across the country. 

Some of the team met outside The Mespil Hotel for a group photo before making their way to the start line. After the race, some team members gathered for refreshments in the Duke pub.

We hope everyone enjoyed the day!



ILFA Home Exercise DVD for Lung Fibrosis Patients

ILFA has developed a Home Exercise DVD for Lung Fibrosis Patients in collaborration with the physiotherapy department at the Mater Misericordiae Hospital, Dublin.

The DVD describes different stretches and exercises to help keep you mobile, strong and fit and also covers breathing techniques, patient experiences and words of encouragement.

Please contact ILFA by calling 086 871 5264 or emailing to order your copy.




Celebrating International Nurses Day!

ILFA would like to pay special tribute to the nurses who are making a difference to the lives of lung fibrosis patients in Ireland, Europe and across the world. We acknowledge the great compassion, kindness and dedication of all nurses and their role in delivering the highest standards of patient care.

International Nurses Day is celebrated every year on 12th May, the anniversary of Florence Nightingale’s birth


ILFA Spring 2016 Newsletter  

The ILFA Spring 2016 Newsletter is now available to read online.…/ILFA_Newsletter_Spring_2016.FINAL-lore…

Please contact ILFA if you would like to be added to or removed from our mailing list.

Tel 086 871 5264 or email


Patient breathlessness survey

ILFA would like to find out more about your personal experiences of breathlessness and how you manage your symptoms. We would be very grateful if you would fill out the questionnaire at the link below, by the 30th April 2016. The survey is anonymous and t