About
EB Community Support Team: in-person visits and telephone support to 700+ members; support grants (697 allocated in 2025 — specialist seamless clothing, sheepskin liners, cooling fans, wheelchairs and adaptive equipment); benefits and housing advocacy (DLA, PIP, disability social services, housing adaptations); school staff EB awareness training; liaison with healthcare teams, social care and housing officers; signposting to specialist EB healthcare. Holiday homes: 2 new properties purchased in 2025, 700+ guests in 2025, heavily subsidised for members. Member events: annual Members' Weekend; regional Members Connect events including first ever Members Connect event in Northern Ireland; day out at London Zoo with EB Community Support Team and nurses; expanding events programme. EB research: partnership with LifeArc for multi-million-pound drug repurposing trial at Guy's/St Thomas' and King's College London; PhD research programme at Queen Mary University of London testing drugs fighting EB in skin cells; EB Priorities Setting Partnership study completed. Membership: comprehensive new membership guide published; nearly 4,000 members; over 1,000 access support services annually. Retail: 60+ charity shops across UK generating £12.34m trading income. Fundraising: runs and challenges programme; supporter events; legacy donations £1.29m in 2024
Key Metrics
Key Outcomes
- £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
- Provisional agreement with LifeArc for largest global EB research investment to date — five-year drug repurposing trial; two new holiday homes purchased in 2025; new men's support chat group launched; new membership guide published; Haydn's 365-day cross trainer challenge raised nearly £10,000; new comprehensive membership guide signposting all free member benefits
- DEBRA UK is registered in England/Wales (1084958) and Scotland (SC039654); over £22m invested in EB research to date; 60+ charity shops UK-wide; also operates DEBRA Scotland; global partner network through DEBRA International; Bracknell-based head office; contact: debra@debra.org.uk
Geography
International
