What the Charity Trustees Do

Operational Governance for the Irish Lung Fibrosis Association

  • The Irish Lung Fibrosis Association (ILFA) was established as a charity in 2002 in memory of Fergus Goodbody.
    Charitable Exemption Number  CHY 15462
  • ILFA registered as a company in 2003 and is registered with the Company Registration Office.
    Company registration number 367940
  • ILFA has a Memorandum of Articles that specifes our aims to promote Research, Education, and Support in lung fibrosis.
  • The postal address for ILFA is: P.O. Box 10456, Blackrock, Co. Dublin. The email address for enquiries is: info@ilfa.ie
  • Our Patrons are Michael Darragh Macauley, and Andrea Corr. Our Patient Ambassador is David Crosby.
  • The Board is made up of trustees who are all volunteers who have all been touched by Lung Fibrosis in some way.
  • Our funding comes primarily from individual and corporate donations and from the fundraising activities of our supporters. All money raised goes towards meeting our aims and helping the patients and families of those affected by Lung Fibrosis.
  • ILFA works to ensure our aims and mission are fulfilled through patient-centred projects and activities, and to ensure the charity is compliant in respect to all aspect of governance.
  • The financial accounts are audited yearly by an accounting firm, approved by members at the AGM and subsequently forwarded to the Company’s Registration Office, in accordance with the legal requirements for annual returns.
  • The AGM takes place yearly in Dublin or online. The audited financial accounts for the year are presented to those present and the auditors are re-appointed for the following year.
  • ILFA is a member of several alliances including the Irish Donor Network (IDN), a group that seeks to represent patient organisations with an interest in organ donation, the Irish Lung Health Alliance and others and the EU-Pulmonary Fibrosis Federation (EU-PFF).
  • ILFA plays an active advocacy role representing our patients and caregivers needs and concerns. ILFA frequently corresponds with the Minister for Health, the HSE, the IDN, and other organisations and authorities, in the interest of progressing specific patient issues and to promote awareness of Lung Fibrosis.
  • ILFA maintains a database of members’ names and addresses for those registered with the charity and in line with GDPR.
  • ILFA helps facilitate the fundraising activities of our supporters. We supply t-shirts, vests, sponsorship cards, and balloons to those taking part in events. Volunteer fundraisers usually contact ILFA via the website or by telephone.
  • ILFA is registered with www.justgiving.com for on-line donations and this involves an annual charge. The Treasurer has secure access to the administration page to monitor the amount of donations received on-line.
  • ILFA produces 3 newsletters annually for patients. The newsletters are posted out to our members and are available to download from the website.
  • ILFA holds 2-3 Patient Information Days annually with a variety of healthcare professionals delivering the programme.
  • The Inaugural Fergus Goodbody Lecture was held in 2010 and an international expert in Respiratory Medicine was invited to Dublin to present a lecture on recent advances in Lung Fibrosis to medical, nursing, and research staff. This is held in conjunction with the Irish Thoracic Society in an annual study day.
  • ILFA produces several publications including the ILFA Newsletter, Patient Information Leaflets, other resources and mailshots.

You are welcome to contact ILFA if you have any queries. Our contact details are below.