Charity information


DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB) – a painful genetic skin blistering condition which, in the worst cases, can be fatal.

Founded 1978

  • Mission statement

    EB has a number of distinct forms: in the least severe form, blistering is confined to the hands and feet. In more severe cases, the whole body is affected and wounds heal very slowly, giving rise to scarring, physical deformity and significant disability. Blistering can also affect inner body linings, such as the mouth and throat and, in its most advanced form, EB is fatal in infancy. There are at least 5,000 people living with EB in the UK and 500,000 people worldwide.

    DEBRA was founded in 1978 and provides an enhanced EB Healthcare Service, in partnership with the NHS, to deliver optimal healthcare to children and adults living with EB and community support staff to work directly with individuals and families. The charity also funds pioneering research to find effective treatments and, ultimately, a cure for EB.

  • Aims

    DEBRA aims to:

    • Strive for excellence in all our activities
    • Work together to achieve our purpose of providing care and curing EB
    • Make a positive difference for people living with EB
    • Be passionate about all we do with DEBRA
  • Overview

    Established: January 1978

    Registered Charity Number: 1084958

    Board members: 15

    Full time staff: 300

    Part time staff: 20

    Volunteers: 1000

    Phone number: 01344 771961

    Address: DEBRA House 13 Wellington Business Park Dukes Ride Crowthorne Berkshire RG45 6LS

    View charity accounts on the Charity Commission website