Total income £18,180,000 and total expenditure £18,560,000 (year ended 31 December 2024, charity no. 1084958 England/Wales and SC039654 Scotland); in 2024 spent £3.8m on charitable activities including £1,079,000 on research, £1,366,000 on EB Community Support, £943,000 on public education, £270,000 on EB healthcare and £185,000 on respite breaks
Key Metric 1
700+ members supported through in-person visits and support calls in 2025; 697 support grants allocated in 2025 for essential items including specialist clothing, cooling fans and sheepskin liners; 2 new holiday homes purchased in 2025 with over 700 guests enjoying holiday homes; £34,000 raised through 2025 winter 'The Longest Night' appeal
Key Metric 2
Largest global investment in EB research to date: multi-million-pound drug repurposing trial provisionally agreed with LifeArc partner at Guy's and St Thomas' NHS Foundation Trust and King's College London; EB Priorities Setting Partnership study completed mapping global research priorities for all four main EB forms
Key Metric 3
£34,000 raised in 2025 winter appeal supporting families like Darcie's with specialist items, emotional support and research; 697 support grants delivered in 2025; first Members Connect event in Northern Ireland; EB Priorities Setting Partnership study completed providing global research roadmap
