GRANT & ANTHEA'S SUMMER BALL 2008

DebRA UK is the national charity working on behalf of people with the genetic skin blistering condition, Epidermolysis Bullosa (EB).

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 patient support group and medical research charity in the UK working on behalf of people living with EB.

Since its establishment in 1978 DEBRA has, thanks entirely to voluntary donations, been able to help people who live with this painful, horrific and disabling condition, by:

• Leading the world in identifying and funding specific research projects likely to lead to a cure and successful treatments for EB
• Establishing specialist treatment centres
• Providing a dedicated EB healthcare team of children’s and adult nurses, a dietitian, welfare support and social workers to pioneer improvements in care, that have led, amongst other things, to children with RDEB no longer being frail, underweight and malnourished
• Enabling prenatal diagnosis to be made at a much earlier stage
• Making skilled counselling and expert guidance on current legislation and governmental services available to EB families, to improve their quality of life.
• Raising 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 almost entirely dependent on the range of specialist support services provided by the charity. These include travelling nurses able to visit children and adults in their homes, clinics, equipment provision and respite holiday accommodation for families under severe pressure.

For more information please visit the DebRA website.