DEBRA is the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB) – a genetic condition which causes the skin to blister and shear at the slightest friction, or even spontaneously. There are at least 5,000 people living with this devastating condition in the UK and 500,000 people worldwide.
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.
DEBRA focuses its work in three areas:
We fund pioneering research to find effective treatments and ultimately, a cure for EB.
We fund, in partnership with the NHS, an enhanced specialist EB Nursing Service to deliver optimal healthcare to children and adults living with EB.
We provide social care support to help people live with dignity. This is a service parents and people with EB can call on, to reach out for advice, advocacy in the face of red tape and emergency grants. We provide access to specially adapted holiday homes and opportunities for social interaction..
We interconnect each of these areas to ensure a holistic approach to our care, from birth, for as long as it is needed.
Without your support people with EB would not benefit from these services.
Charity Registration Number 1084958