Health & Wellbeing Community & Social Justice
2026 Enhanced
DEBRA UK

Impact — Winter 2026

DEBRA UK (charity no. 1084958) is the national patient support organisation for people living with epidermolysis bullosa (EB), also known as butterfly skin, based in Bracknell, Berkshire. The Winter 2026 Impact newsletter highlights 700+ members supported in 2025, 697 support grants allocated, £34,000 raised through the winter appeal, two new holiday homes and a landmark provisional agreement with LifeArc for the largest global EB research investment to date — a multi-million-pound drug repurposing trial.

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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 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 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 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 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 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 Trust and King's College London; EB Priorities Setting Partnership study completed mapping global research priorities for all four main EB forms

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

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