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Our founder

Our founder

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

When Phyllis' daughter Debra was born in 1963 little was known about EB; Phyllis was told that there was nothing that could be done for Debra and to take her home and look after her until she died. Phyllis ignored this advice and instead looked for ways to treat Debra's skin using cotton dressings.

Years later when Debra was 15 Phyllis was contacted by a woman who wanted help and advice following the birth of her baby who had EB. Phyllis was shocked and saddened that nothing had changed in 15 years – and nothing would unless she and other parents took action. 

Phyllis wrote to magazines, radio stations, celebrities and hospitals to organise the first meeting for parents of children with EB. 78 people attended the meeting which was held in Manchester – a meeting which led to DEBRA being formed. Sadly on 21 November 1978, the year the charity was founded, Debra passed away.

DEBRA is now international in scope with sister organisations in 40 countries, a worldwide research programme and strong clinical and nursing services. When Phyllis founded the charity her daughter had cotton rags to protect her skin, uninformed professionals often thought that the condition was contagious and there was little that could be done to alleviate the continual pain the condition imposes. Today, all UK patients have access to state of the art dressings, diagnosis of the specific genetic type of EB is routine and medical research trials are happening across the world.

Phyllis passed away aged 81 on 2 October 2009, but thanks to the huge contribution she made to the EB community, her memory will live on.


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