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DEBRA UK history timeline

1978
- Phylis Hilton establishes DEBRA in the UK as the world’s first patient support organisation for people living with EB
1981
- DEBRA UK funds the world’s first EB research project
1987
- DEBRA UK funds the world’s first dedicated EB nurse at Great Ormond Street Hospital in London. Today we continue to part-fund EB healthcare professionals including specialist EB nurses and dieticians working in the UK’s four EB healthcare centres of excellence
1987-1989
- DEBRA UK funds multiple EB healthcare specialists in NHS hospitals including EB physios, EB dieticians, and children’s and adult EB nurses
1990
- Great Ormond Street Hospital and Guys and St Thomas’ Hospital in London are established as the first two EB healthcare centres of excellence
1992
- DEBRA UK funded research helps identify the first EB genes
- First ‘DEBRA Day’ held which brings together people living with EB for the first time
1994
- 10 causative genes for EB discovered through further DEBRA UK funded research
- First DEBRA UK holiday home opened to provide vital, low-cost respite breaks for people living with all types of EB
1995
- DNA-based prenatal diagnosis for EB is developed
1998
- DEBRA UK funds first podiatrist specialising in EB
1999
- DEBRA UK employs first EB Community Support Manager (then known as EB Social Care Workers) to offer information, practical, financial, and emotional support, guidance, and advocacy for people living with all types of EB, their families, and carers. Today we have an EB Community Support Team of 10 to support the entire UK EB community
2000
- DEBRA UK funds first research projects focused on cancer in patients with EB

2002
- DEBRA UK commissions world’s first EB gene therapy clinical trial
- Birmingham Children’s Hospital and Solihull Hospital join Great Ormond Street Hospital and Guys and St Thomas’ Hospital as EB healthcare centres of excellence
2004
- DEBRA UK co-funds the UK’s first national diagnostic EB laboratory, named after the late Robin Eady, a leading dermatologist who did so much to further collective understanding of EB. The laboratory, located at Guy’s and St. Thomas’ Hospital in London, forms part of a UK network of centres for the diagnosis and management of patients with all types of inherited EB providing skin biopsy and gene mutation analysis to aid diagnosis of all types of EB
2005
- DEBRA UK funds a project to develop small therapeutic drugs called siRNA to reduce the effect of the defective gene in EBS
- DEBRA UK commissions first human ex-vivo (outside of the body) gene therapy clinical trial for junctional EB
2008.
- DEBRA UK partners with the NHS to set up the National Specialised Commissioning Group (NSCG) which oversees the provision of specialist healthcare for people with all types of EB in the UK. DEBRA UK continues to work with the NHS today to support the four EB healthcare centres of excellence and the Scottish EB service that are so vital to providing specialist EB healthcare services across the UK
- DEBRA UK works in partnership with Bullen Healthcare to develop the first EB specific home delivery service for all wound care and medications
2011
- A DEBRA UK funded podiatrist develops new insoles specifically designed to improve mobility for people with all types of EB
2012
- The NHS starts funding core EB nursing activities previously co-funded by DEBRA UK in the EB healthcare centres of excellence. This enables DEBRA UK to increase focus and investment on EB community care and support and research into effective treatments for all types of EB
- First EB clinical practice guidelines (CPGs) published. Part-funded by DEBRA UK, CPGs help healthcare professionals understand how to treat someone living with EB. The first was CPG was focused on EB wound care
- DEBRA UK funded research identifies a further 18 genes for more than 30 subtypes of EB
2013
- The DEBRA UK EB Community Support Team expands to seven to provide nationwide support for the EB community
- The first DEBRA UK Clinical Fellowship is launched in partnership with Great Ormond Street and Guys and St Thomas’ Hospitals
- DEBRA UK launches first EB outreach clinic
- The EB nursing teams and DEBRA UK work together to design and develop a new range of dressing retention garments for EB patients
2014
- DEBRA UK funds a research project, led by Professor Jouni Uitto (Thomas Jefferson University, USA) to see if existing drugs can be repurposed to treat some kinds of EB. The EB drug repurposing journey begins!
2015
- Over 300 people from the UK EB community attend the first ever DEBRA UK members weekend and AGM. Members weekend has now become an annual event for the UK EB community

2017
- DEBRA UK provides funding to develop and implement the world’s first accredited EB podiatry training programme
- DEBRA UK provides funding for the UK’s first rare disease centre. The centre, located at Guy’s and St Thomas’ Hospital was the first of its kind in the UK and was created to support adults and children with complex rare genetic diseases, including EB, that affect many organs in the body. The centre brings together several specialist services in one place, saving time and improving patient experience for people with all types of EB and other rare diseases
- DEBRA UK funds the first human clinical trial of a targeted EB cancer therapy specifically designed to treat cancers caused by Recessive Dystrophic EB
2020
- DEBRA UK established and hosted EB2020 London, the world’s first EB congress which brings together members of the global EB community to share experiences and ideas, new technologies, and best practice thinking to further support and treatment options for people living with all types of EB
2022
- DEBRA UK commissions the most comprehensive EB patient insight study yet. Insights from this study, which was completed in early 2023 by over 300 members of the EB community, 100 GPs, and 50 dermatologists, have helped shape the charity’s future services and campaigning activities
- To increase awareness of EB and of DEBRA UK, the charity went through a re-brand that was rolled out across all visual assets and selected DEBRA UK stores. The refreshed branding included a more contemporary colour scheme and incorporated ‘The Butterfly Skin Charity’ into the DEBRA UK logo to capitalise on awareness of the term butterfly skin. The new branding also included a signature call to action – ‘Help us stop the pain of EB’
2023
- The EB drug repurposing programme commenced with the first EB drug repurposing clinical trial (Apremilast) commissioned by DEBRA UK. This clinical trial could lead to an approved drug treatment that reduces blistering symptoms in adults and children living with severe EBS
- The UK gets its first approved drug treatment (Filsuvez®) for the treatment of partial thickness wounds associated with dystrophic and junctional EB. DEBRA UK members provided the patient testimony that was crucial to achieving the NICE approval of this drug treatment
- DEBRA Vice President, Graeme Souness CBE and Team DEBRA swam the English Channel and raised over £1.5m to help stop the pain of EB. This activity also helped increase unprompted awareness of EB from 6% to 10%*, and awareness of DEBRA UK from 17% to 23%*. *YouGov Study July-23
- DEBRA UK invests in EB community support by providing funding to increase the team to 10 managers located across the UK enabling more support to be offered to more members
- DEBRA UK commissions a project with Helix, Imperial college London, to better understand the practical needs of the EB community and to co-design products to enhance daily activities/life living with EB
- DEBRA UK commissions a partnership with Tolley Health Economics to develop EB specific health economic data to ensure readiness for future treatment applications to NICE and for NHS access and reimbursement
2024
- DEBRA UK partnered with NHS England to capture and study healthcare data from patients living with all types of EB. This important long-term partnership will help increase collective understanding of EB including frequency, nature, causes and outcomes of the different types of inherited EB. It will also support researchers and the pharmaceutical industry working on the cause, prevention, diagnosis, treatment, and management of EB symptoms, to improve patient care and outcomes.
- Filsuvez® was approved by the Scottish Medicines Consortium for the treatment of partial thickness wounds amongst patients with dystrophic and junctional EB in Scotland
- DEBRA UK commissioned a James Lind Alliance (JLA) study for all types of EB, the first from a patient support organisation for a rare condition. The JLA study, which is a global study led by DEBRA UK, will help identify the most important unanswered research questions about all types of EB and will support the prioritisation of future EB research
- DEBRA UK partnered with the Cancer Research UK Scotland Institute to develop pre-clinical cancer models that will help increase understanding around the progression of skin cancer in patients living with recessive dystrophic epidermolysis bullosa
- Thanks to funding from Geoff and Fiona Squire, DEBRA UK opened its 7th holiday home. Now DEBRA UK members can access low-cost vital respite breaks in six beautiful locations across the UK including the Lake District, Newquay, North Norfolk, North Wales, Poole, and Weymouth
- DEBRA UK opens new shops in Lightwater, Trowbridge, Guildford, and South Queensferry
- DEBRA UK funded research investment tops £22m – through this research the main genes that cause EB have been identified, human clinical trials have commenced, and large pharmaceutical companies are now investing in global trials of potential treatments for different types of EB. There is still so much more that needs to be done but together we can BE the difference for EB