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About DEBRA

About DEBRA

For people whose skin doesn’t work – we do.

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.

DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had EB – the charity was the world’s first EB patient support group. 

Our vision:

We have a vision of a world where no one suffers from the painful genetic skin blistering condition, EB.

DEBRA focuses its work in two areas:

  • We fund pioneering research to find effective treatments and, ultimately, a cure for EB.
  • We provide care and support to improve the quality of life for individuals and families living with EB.

Read more about our work and the principles that govern it in our Research and Care strategy.

Patron
HRH The Countess of Wessex, GCVO

Gemma's story

Gemma's story

"DEBRA has made a great deal of difference to my life – without them I would’ve felt on my own." Gemma

READ HER STORY