What is DebRA?

DebRA was founded in 1978 by a group of parents whose children were affected by EB. At this time only some 200 people with EB were known to health professionals in the UK.

The original aims of the charity were to stimulate knowledge of and interest in EB for the benefit of those with the condition and their families and to fund medical research into EB. From these humble origins DebRA has grown significantly with DebRA Groups now having been established in 32 countries around the world.

DebRA is the only national patient support group and medical research charity in the UK working on behalf of people living with EB. DebRA relies entirely on voluntary donations.

Since 1978 DebRA has:

• Led the world in identifying and funding specific research projects – these are likely to result in a cure and successful treatments for EB.
• Established specialist treatment centres.
• Gathered a dedicated EB healthcare team of children’s and adult nurses, welfare support and social workers to pioneer improvements in care. This has led, amongst other things, to children with RDEB no longer being frail, underweight and malnourished.
• Enabled prenatal diagnosis to be made at a much earlier stage.
• Provided skilled counselling and expert guidance on current legislation and Governmental services available to EB families, improving their quality of life.
• Helped to raise awareness of the issues surrounding EB to the general public, healthcare professionals, schools, and other interested parties.
• And much, much more...

In the UK DebRA is the main funder of specialist EB treatment and research facilities at national or regional level. People affected by EB therefore not only rely very heavily on DebRA-funded research to provide a long term answer to the illness, but are also very dependent on the range of specialist support services provided by the charity.