Debra is the national charity that supports individuals and families affected by Epidermolysis Bullosa. Debra was founded in 1978 by Phyllis Hilton whose daughter Debra had EB – the charity was the world’s first EB patient support group. There is currently no known cure for EB. The hard and dedicated work from those at Debra is focused on funding research to change this, while also supporting people living with EB to enhance their quality of life through improved healthcare, access to information and respite care.
What is Epidermolysis Bullosa?
This is a painful genetic skin blistering condition which, in the worst cases, can be fatal. Those born with EB have skin so fragile they are called ‘butterfly children’ – their skin is quite simply as fragile as the wing of a butterfly. Painful open wounds and sores form where this exceptionally fragile skin is damaged – in some cases, internal linings and organs are also affected.
Tragically, certain types of EB can be fatal in infancy and others are severely life-limiting. We estimate that there are more than 5,000 people living with EB in the UK, and 500,000 worldwide.
Ways to raise funds for Debra:
Where do the funds raised go?
- £15 could buy a special needs feeder system for babies who have blistered mouths
- £32 could pay for a Debra member to be supported by our community and membership support team for a month
- £168 could pay for an hour of pioneering research
- £597 could pay for a Debra member to be supported through healthcare, membership and community support team for a year
‘’We have a vision of a world where no one suffers from the painful genetic skin blistering condition, EB.’’