Impact Snapshot
Key Metric 1
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...
Key Metric 2
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...
Key Metric 3
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...
£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