Who we are

Staff members of DEBRA's Research and Member Services teams during Members Weekend 2023. 

DEBRA UK was established in 1978 by Phyllis Hilton, whose daughter Debra had epidermolysis bullosa (EB), as the world’s first patient support organisation for people living with EB.

Find out more about DEBRA’s history.

Today DEBRA UK is a national medical research charity and patient support organisation for anyone living in the UK with any type of EB, their family members, carers, plus healthcare professionals and researchers specialising in EB.

Annually DEBRA UK supports 3,800+ members and employs over 370 staff and 1,000+ volunteers who support the charity across a network of 90+ charity shops located throughout England and Scotland. In 2023, volunteers provided over 211,000 hours of their time for free, saving the charity over £2.2 million.

DEBRA UK is also the largest UK funder of EB research and since 1978 has spent over £22m on EB research and has been responsible, through funding pioneering research and working internationally, for establishing much of what is now known about EB.

 
What we do

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.

Specialist healthcare

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.

 
Community support

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.

Research to find treatments

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.