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.
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.
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
Established: January 1978
Registered Charity Number: 1084958
Board members: 15
Full time staff: 300
Part time staff: 20
Phone number: 01344 771961
Address: DEBRA House 13 Wellington Business Park Dukes Ride Crowthorne Berkshire RG45 6LSView charity accounts on the Charity Commission website