Staff members of DEBRA's Research and Member Services teams during Members Weekend 2023.
DEBRA was established in 1978 by Phyllis Hilton, whose daughter Debra had epidermolysis bullosa (EB), as the world’s first patient support group for people living with EB.
Find out more about DEBRA’s history.
Today DEBRA UK is a national charity supporting 3,800+ members, which includes people living with EB, relatives, partners, or carers of someone with EB, healthcare professionals and researchers who work with EB.
DEBRA UK employs over 370 staff and 1,000+ volunteers who support us across a network of 90+ charity shops located throughout England and Scotland. In 2023, our volunteers provided over 211,000 hours of their time for free, saving the charity over £2.2 million.
DEBRA UK exists to provide care and support to improve quality of life for people living with EB, and to fund pioneering research to find effective treatments and, ultimately cure(s) for EB.
Our vision is for a world where no one suffers with EB, and we will not stop until this vision becomes a reality.
From discovering the first EB genes to funding the first clinical trial in gene therapy, 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 the estimated 5,000+ people living with EB in the UK and their families and carers get the vital and wide-ranging support they need.
The income we generate from our fundraising activities and our network of charity shops, enables us to provide care and support to improve the quality of life for people living with EB today, and fund pioneering research to find treatments and cure(s).
Find out more about how we raise and spend money.
We support specialist healthcare by working with the 4 national EB centres and over 60 EB healthcare professionals including specialist EB nurses to ensure our members are connected with the services they need to improve their quality of life.
Through our Community Support Team we deliver a variety of support services for the EB community including general information about EB plus support with any issues impacting everyday life including benefits and grants, advice for employers and schools, housing, emotional support and much more.
We invest in life-changing research and are currently funding 19 research projects with the aim of finding treatments to significantly reduce the devastating symptoms and pain of EB whilst we work towards finding a cure.
Find out more about our research program.
DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had dystrophic EB – the charity was the world’s first EB patient support group.
Our values provide a set of common beliefs, behaviours and understanding to support and enable us to work collectively to achieve our mission.
Together, over the past 40 years, we have achieved a lot and have a proud history. We were the first organisation in the world established to focus on EB.
All of our policies can be found here on our website, which covers the different areas of our work.
Find out what we've achieved over the past year and how we've put your money to good use supporting people living with EB.
For a community to thrive, every member needs to feel valued, listened to, respected, welcome and represented.
Find out how DEBRA fundraises and the activities that its fundraising supports.
At DEBRA, we are working hard to become a more sustainable and environment-friendly organisation in everything we do and everyone we work with.
At DEBRA we are proud to work in partnership with healthcare, research, and corporate partners across the UK and internationally.