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About DEBRA UK – The leading EB charity
Who we are
We are a UK EB charity; a national medical research charity and patient support organisation for anyone in the UK living with an inherited form of EB, their family members, carers, plus healthcare professionals and researchers specialising in epidermolysis bullosa (EB).
We also provide community support services for people living with acquired EB, known as epidermolysis bullosa acquisita (EBA).
The charity was established in 1978 by Phyllis Hilton, whose daughter Debra had EB, as the world’s first EB patient support organisation.
DEBRA UK went on to establish DEBRA International, which now runs independently to help establish and support a global network of over 50 DEBRA patient support organisations.
In the UK we are the EB patient support organisation with almost 4,000 members. Every year, over 1,000 of our members access our support services.
In 2023 we invested almost £3.5m in EB research, EB community care and support, and EB specialist healthcare. We also spent close to £1m to help ensure more people in the UK are aware of EB and of what we do as a charity.
With more awareness we hope to secure more support because we need as many people as possible to make our vision of a world where no one suffers with EB a reality.
We employ 370 colleagues and are incredibly grateful to be able to count on the support of over 1,000 volunteers who help us run our network of over 80 charity shops, which along with our other fundraising activities, provides the revenue we need to provide EB community care and support services for today and to conduct research into effective EB treatments for all types of EB for tomorrow.
What we do
DEBRA UK exists to provide community care and support services to improve quality of life for people living with all types of inherited and acquired EB. We also fund pioneering research to find effective treatments for all types of inherited EB.
From discovering the first EB genes to funding the first clinical trials in gene therapy and drug repurposing, we have played a pivotal role in EB research globally and have been responsible for making significant progress in advancing diagnosis, treatment, and daily management of EB.
We are committed to making sure that every person living with EB in the UK, their families, and carers get the vital and wide-ranging support they need.
We partner with the NHS to deliver an enhanced EB healthcare service which is vital for people living with all types of EB.
There are four designated EB healthcare centres of excellence in the UK and the Scottish EB service that provide expert specialist EB healthcare and support, as well as other hospital locations and clinics which aim to provide more local EB services.
We develop and encourage the adoption of new initiatives and provide funding to enhance the services that the NHS has a duty of care to provide for its EB patients. This includes specialist resource such as EB nurses and dieticians.
We also partner with other organisations to provide counselling and mental health wellbeing services, fund EB training, and develop best practice guidelines for healthcare professionals to help them understand how to treat patients with all types of EB.
Our journey to patient-centric EB healthcare
As well establishing much of what is now known about EB through pioneering research and commissioning the first EB drug repurposing clinical trial, we have also led the way in ensuring people with all types of EB have access to world-leading specialist EB healthcare and community support services.
Find out more about some of the key milestones on our journey to delivering patient-centric EB healthcare and community support.
Our EB Community Support Team works with the EB community, healthcare, and other professionals to improve quality of life for people living with all types of EB.
The team offers support, advocacy, information, and practical help at every stage of life with EB.
The membership and engagement team works closely with members to maximise engagement and involvement opportunities, ensuring the needs of our members are at the heart of our thinking and help guide the services we offer for the entire UK EB community.
Our membership scheme includes opportunities for discounted holiday home respite breaks, grants, and bespoke events where members from across the UK can come together to share knowledge and experience, make vital connections and friendships, and access expert advice and support from our EB Community Support Team.
DEBRA UK is the largest UK funder of EB research, and in the top 15 UK-based research funders across all diseases and conditions investing in global research.
Since we were established in 1978, we have invested over £22m and been responsible, through funding pioneering research and working internationally, for establishing much of what is now known about EB.
We are now at a stage of our research journey where we need to accelerate the pace of discovery, to find effective drug treatments for every type of EB. We started this journey in 2023 by commissioning our first EB drug repurposing clinical trial and hope to commission further clinical trials in 2025 and beyond.
In 2024 we commissioned a James Lind Alliance (JLA) study for EB to help us identify the most important unanswered research questions about all types of EB. This will help us understand what EB research we should be prioritising in the future.
The EB JLA study is the first to be commissioned by a rare disease patient support organisation and will covering all inherited types of EB. It is international in scope and will include input from the global EB community; people living with all types of EB, carers, and healthcare professionals who work with those affected by EB. We expect to see results in 2025.
Find out more about some of the key milestones on our research journey.
Our mission, vision and values
- Our vision: A world where no one suffers with epidermolysis bullosa (EB).
- Our mission: Provide life-long care, while seeking cures, for all those affected/impacted by living with EB.
