Health & Wellbeing Community & Social Justice 2025
Debra Ireland

Impact Report and Financial Statements — Year Ended 31 March 2025

Debra Ireland (CHY 8703 / RCN 20021726) is the national charity supporting approximately 300 people in Ireland living with epidermolysis bullosa (EB), based in Dublin. The 2024/25 Annual Report covers 90 home visits, 381 family support calls, 112 counselling sessions funded, a historic government commitment to ring-fence home care funding for severe EB, and the Run to 40 campaign with Colin Farrell and Emma Fogarty that raised over €1 million — the largest fundraising campaign in Debra Ireland's history.

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📋About

Family Support: home visits (90 in 2024), family support phone calls (381), advocacy calls (87) and meetings (34) with HSE, hospitals, healthcare providers, charities and community services; emergency medical alert cards (79 issued); financial grants — respite and wellness grants, special needs grant (e.g. transport funding for employment), counselling and therapy grant (112 counselling sessions, six osteopath sessions, one private OT report, 20 driving lessons, 14 return train journeys to Dublin for hospital appointments); personalised illustrated booklets for children starting school (shared with Debra UK, Canada and Austria); secondary school transition support (leaflets, posters and video for teachers and students); EB Expert Panel (launched 2022); new membership guide. Family support team expanded from 2.4 FTE to 3.4 FTE approved by Board. Research: support for research into EB treatments; involvement in global research priorities through EB Priorities Setting Partnership; collaboration with DEBRA UK and Debra International; Irish research investment. Advocacy: government commitment secured to ring-fence funding for home care packages for severe EB; EB Butterfly Review; representation of Ireland's EB community on the global stage; ERN Skin and Centres of Excellence engagement. Fundraising: Run to 40 (Colin Farrell and Emma Fogarty, Dublin Marathon October 2024, initial target €400,000 raised to €1 million goal — €1 million presented September 2025); Late Late Show appearance raised €415,000 in a single evening; front page media coverage bringing EB to national consciousness; ambassador programme including Colin Farrell and Jonny Sexton; community fundraising events; Christmas family dinner; family days out including event at Shelbourne Hotel. New 2025-28 strategy: Family Support and Psychosocial Care; Advocacy and Policy; Research and Innovation; Fundraising and Growth (target 29% income growth over three years)

📊Key Metrics

Run to 40 campaign with Colin Farrell and Emma Fogarty at the Dublin Marathon (October 2024) raised over €1 million for Debra — the largest single fundraising campaign in the charity's history; 300 people in Ireland supported who are living with EB; income figures in Euro currency (Irish registered charity CHY 8703 / RCN 20021726) Key Metric 1
90 home visits to families in 2024 (up from 67); 381 family support phone calls; 87 advocacy calls with external bodies; 34 advocacy meetings; 79 emergency medical alert cards issued; 17 new people living with EB connected with family support service Key Metric 2
100% of family support service users rated it as exceptional or very good; 98% said they have access to all the information they need; 100% said they have access to the service when they need it; 112 counselling sessions funded; 20 driving lessons funded for two people; government committed to ring-fence funding for home care packages for people living with severe EB Key Metric 3

✅Key Outcomes

  • Government commitment secured to ring-fence funding for home care packages for people with severe EB — a major advocacy win; Run to 40 campaign raised €1 million; 100% of family support users rated service exceptional or very good; EB reached front pages of Irish national newspapers for the first time; 17 new families connected with support service
  • New three-year strategy 2025-28 launched; family support team expanded from 2.4 to 3.4 FTE; EB Butterfly Review completed and signed off by Board end 2024; first ever Members Connect event in Northern Ireland (cross-border collaboration with DEBRA UK); emergency medical alert cards introduced and 79 issued; personalised school booklets being shared internationally with Debra UK, Canada and Austria
  • Registered charity CHY 8703 / RCN 20021726; company no. 141279; based at Butterfly Cottage, 8 Clanwilliam Terrace, Grand Canal Quay, Dublin 2; audited by Grant Thornton; Triple Lock member of Charities Institute Ireland; partner with Children's Hospital Crumlin (paediatric) and St James Hospital (adult); member of Debra International; ambassador Colin Farrell; ambassador Jonny Sexton

📍Geography

International

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