ILFA’s vision is to enhance the quality of life for individuals and families living with lung fibrosis.
Our mission is to help individuals and families living with lung fibrosis, and the healthcare staff caring for them by providing evidence-based information, support and practical resources, by advocating for their needs, and contributing to awareness, education and research in Lung Fibrosis.
People are at our heart
• We promote person-centred care and respect and value every individual.
• We promote a positive approach to health and well-being to empower individuals.
• We connect people and help build trusted relationships.
• We help, advise, inform and support individual’s choices and decisions.
• We treat everyone professionally and with dignity and empathy.
• We engage with our stakeholders to understand and prioritise their unmet needs.
• We support change, and challenge current practice to improve access to appropriate resources.
• We speak up on people’s behalf and lobby Government for adequately resourced services.
• We collaborate with other patient organisations, alliances, and networks to achieve shared goals.
ILFA’s board is made up of trustees who are all volunteers who have personal experience of lung fibrosis, and healthcare professionals with a special interest in lung fibrosis.
Our current trustees (also called Board Members) are
Eddie Cassidy (Chairman, Company Director)
Liam Galvin (Treasurer, Company Director)
Nicola Cassidy (Secretary, Company Director)
Professor Jim Egan (Company Director)
Medical Advisor: Dr Kate O’Reilly
The board meets approximatley every 4 weeks online.
Click here to read more about What the Charity Trustees Do
ILFA are lucky to have four well known and hugely popular patrons associated with our charity. We are grateful to our patrons for their continued support.
David Gilna, award-winning Dublin actor, screenwriter and playwright, joined ILFA as a patron in 2022! David has performed in The West End, Shakespeare’s Globe and off-Broadway and most recently has finished his debut sell-out tour of America. Known for his award-winning plays “The Unsung Hero”, “My Bedsit Window” and “A Bolt From D’Blue” and films “Ya Clown” and “One For The Ditch”. David co-founded Theatre Under The Big Top with Charles O’Brien at Electric Picnic in 2008, and Lightning Comedy in 2018. He is best known for being struck by lightning and never talking about it. David is honoured to have been chosen as a Patron for ILFA.
Michael Darragh Macauley, Dublin GAA star became ILFA’S Patron in June 2013. Michael Darragh helped to officially launch the ILFA 2000 Steps A Day Exercise challenge along with the late Senator Feargal Quinn.
It is hoped that Michael Darragh’s strong association and passion with high level sport and exercise will inspire all of us to commit to a more active, healthy, energetic and disciplined lifestyle. Michael Darragh, also a trainded yoga instructor, helped ILFA design and deliver a youga DVD that is specifically aimed at lung fibrosis patients.
Michael Darragh is also a campaign ambassador for “Make life your legacy” and supports the “Opt for Life” call for the introduction of the soft opt out model of organ donation in Ireland.
Andrea Corr musician, songwriter, singer, and actor was the lead singer in The Corrs, with her sisters Caroline and Sharon and her brother, Jim, before embarking on her solo career in 2007. Andrea’s latest album, Lifelines, in which sings covers of songs that were important to her when she was younger, was released in 2011.
In 2005, Andrea was awarded an honorary MBE for her contribution to music and charity.
Andrea has a particular interest in IPF . Her mother, Jean, had IPF but unfortunately died in 1999, while awaiting a lung transplant. The Corrs tribute album, Home, released in 2005, is dedicated to her memory.
Andrea said “I am delighted to be a patron of ILFA which is obviously a charity very close to my heart”.
is a well known and hugely popular public figure. He was the Chief News Correspondent and the Washington orrespondent for RTÉ News and has presented a series of nature documentaries for RTÉ when he traveled to the Amazon, the Ganges and the Artic.
Charlie became ILFA patron in 2007 and was present at the Patient Open Day in April 2008 where he officially launched the ILFA “Directory of Services”.
“I was delighted to be asked to launch the Directory of Services for ILFA. It is great to see how important a self-help group like ILFA is in getting things done. I would also like to acknowledge Professor Jim Egan and all the medical staff in the Mater Hospital for their work and dedication to helping people with IPF.”
ILFA was founded as a not for profit charity in 2002 and was incoporated as a company in 2003 to honour the memory of Fergus Goodbody who died from Lung Fibrosis. ILFA was set up by Nicky Goodbody, the late Terence Moran, Marie Sheridan, and Professor Jim Egan. The primary aims of the Irish Lung Fibrosis Association charity are to provide a source of information and support to people with the condition, and to promote education and suppport research.
ILFA is funded by donations and fundraising activities. The fundraising efforts of our supporters are vitally important to enable ILFA continue our work.
ILFA is registered with the Companies Office and the Charities Regulatory Authority. Our financial accounts are audited every year and submitted to the Companies Office following our annual general meeting, and published on the ILFA website.
Postal address and address for correspondence: ILFA, PO Box 10456, Blackrock, Co. Dublin.
Registered address: Lavery House, Earlsfort Terrace, Dublin 2.
Company Directors: Edward Cassidy, Professor Jim Egan, Liam Galvin, and Nicola Cassidy.
Charity Trustees: Edward Cassidy (Chairman), Liam Galvin (Treasurer), Nicola Cassidy (Secretary), Prof Jim Egan, Michael Geoghegan, Lynn Fox, Lindsay Brown, Patricia Jones, Colin Edwards.
The IRISH LUNG FIBROSIS ASSOCIATION is the national patient organisation for lung fibrosis
Registered charity number 20053437
Company registration number 367940
Charitable exemption number CHY 15462
The Board of the Irish Lung Fibrosis Association (ILFA) is responsible for the running of the charity in a voluntary capacity and to the highest professional standards. All trustees are fully committed to operating the organisation with high standards of good practice and transparency, to delivering the charity’s mission statement, its goals and values, to fulfilling our legal requirements, and maintaining the trust, confidence and support of our members, fundraisers, volunteers, donors and other stakeholders.
We aim to meet our compliance responsibilities by applying the appropriate policies and procedures necessary to ensure that our organisation is run effectively, efficiently, and transparently.
Charities Governance Code: ILFA is fully compliant with the self-assessed Governance Code for community and voluntary organisations as of April 2022.
ILFA is fully compliant with the following voluntary codes, best practice models and statutory obligations:
Charities Regulatory Authority: ILFA is registered with the Charities Regulatory Authority (www.charitiesregulator.ie) and listed on the Charities Regulatory Authority Register of Charities (Charity Registration Number 20053437) in the Republic of Ireland.
The Regulation of Lobbying Act 2015: ILFA is registered on the Register of Lobbying website which is maintained by the Standards Commission (www.lobbying.ie) and provides information to the Standards Commission about our lobbying activities three times a year.
Irish Revenue Commissioners: ILFA is an approved charity with the Irish Revenue Commissioners, registered charity number CHY10456
Good Fundraising Principles: ILFA is compliant with the standards contained within the Statement of Guiding Principles for fundraising (https://www.charitiesinstituteireland.ie/uploads/default/files/5_603292d04d66f.pdf)
Transparent auditing and account reporting: ILFA prepares an annual report and financial statements. We make our annual independently audited accounts available on our website.
Policies: ILFA has developed a range of relevant policies that guide our activities as part of our governance obligations. Existing policies are reviewed regularly and updated as needed. New policies are developed as the need arises. ILFA’s list of policies can be viewed via the link below
We welcome your feedback
ILFA is committed to conducting all our activities and communications to the highest possible standard. We welcome positive and negative feedback. If you would like to contact us with feedback or to make a complaint, please email firstname.lastname@example.org, call 086 871 5264 or write to ILFA, PO Box 10456, Blackrock, Co. Dublin.
Our Complaints policy 2022is available to download and read here.
ILFA is delighted to be part of formal alliances and coalitions with other leading patient organisations who support our work. Collaboration and partnership with other organisations are key priorities for ILFA that enable our charity to embrace opportunities and share insights, expertise, skills, knowledge, and best practice with partners in Ireland, UK, Europe and globally to advance patient care.
ILFA is a member of the following organisations
ILFA is grateful to have established important relationships with corporate organisations who have kindly supported our patient-centred activities over the years including
We are grateful to the companies who donated to ILFA in lieu of flowers at the funeral of an employee, colleague or a relative.
Partnering with ILFA
There are many ways your company, business, society, sporting body, school, college, or club can be involved in supporting the work of ILFA. We would be delighted to work with organisations of all sizes seeking a charity partner through corporate social responsibility or simply giving back to society to help raise awareness and valuable funds. In return, we will support your campaign with ILFA branded merchandise and fundraising assistance, and will gratefully acknowledge your support online, in print and via social media to recognise your commitment to charity.
Please consider ILFA as a potential partner for the future and help make a difference. Contact ILFA on 086 871 5264 or email email@example.com for more information
ILFA is registered with the Companies Office and the Charities Regulatory Authority.
Our financial accounts are audited every year by Whiteside Cullinan & Co. Accountants and submitted to the Companies Office and the Charities Regulatory Authority following our annual general meeting. ILFA’s financial year runs from 1st January to 31st December inclusive (as from 2019).
ILFA’s Financial Statements provide details of the charity’s income and expenditure for the finanical year.
ILFA’s Annual Reports are available here.
The stakeholders of the Irish Lung Fibrosis Association include
The Board of ILFA
Patients diagnosed with lung fibrosis
Caregivers of patients diagnosed with lung fibrosis
Donors and funders
Pharmcaeutical and Oxygen Industry representatives
Alliances with other charities
The Irish Lung Fibrosis Association has recevied a number of prestigious national awards for our work over the years.
ILFA won the 2022 Irish Healthcare Award for the Best Patient Organisation Project for the “ILFA’s online exercise programme to meet the unmet healthcare needs of pulmonary fibrosis patients during Covid-19 and beyond”.
ILFA won the 2014 Irish Healthcare Award for the Best Patient Organisation Project of the Year for the “ILFA 2000 Steps a Day Exercise Challenge for Lung Fibrosis Patients”.
Pictured are Pat Campion of sponsors Lundbeck presenting the award for Patient Organisation Project of the Year to Nicola Cassidy and Irene Byrne.
In 2016, Roche Products Ireland in partnership with ILFA, COPD Support Ireland, the Asthma Society and Edelman won the 2016 Irish Healthcare Award for the Best Pharmaceutical
Pictured are Erica White (representing COPD Support Ireland) with Dolores Williams and Nicola Cassidy from ILFA.
ILFA’s National Patient Charter for Idiopathic Pulmonary Fibrosis won the 2016 Plain English Award for Best Patient Information Leaflet from the National Adult Literacy Agency.
Pictured are Anne Casey, Matt Cullen and Nicola Cassidy receiving the award from Declan Black, Mason Hayes & Curran, who sponsored the National Adult Literacy Agency’s Plain English awards.
In 2019, ILFA’s project entitled “World Café on Palliative Care and Planning for the Future with Lung Fibrosis” was shortlisted in the in the highly competitive Best Patient Organisation Project of the Year category and received a commendation.
Pictured are Gemma O’Dowd, Nicola Cassidy and Dr Anne Marie Russell.
ILFA’s Yoga DVD for Lung Fibrosis Patients was shortlisted for Patient Lifestyle Education Project of the Year at the 2019 Irish Healthcare Awards.
ILFA’s World Cafe on Pulmonary Fibrosis Services in Ireland during Covid-19 and Beyond was shortlisted for the Patient Organisation Project of the Year at the 2021 Irish Healthcare Awards.
The Denise Cassidy Memorial Award recognises and celebrates the kindness, compassion and humanity of a hospital healthcare worker to a lung fibrosis patient or their family. Every two years, 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.
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