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Celebrating 40 years of fighting EB

Celebrating 40 years of fighting EB

We’re celebrating our 40th anniversary – 40 years of helping people suffering from EB and funding research into effective treatments and a cure for the condition.

Where we started 

When Phyllis Hilton’s daughter Debra was born with EB, she was simply advised to take her home and look after until she died. Phyllis ignored this advice and went on to found our charity, DEBRA, to help other people suffering from EB.

Together with a small group of dedicated parents, she worked tirelessly improve the quality of life for people suffering from EB and learn more about the condition – DEBRA was the world’s first EB patient support group.

Why are we celebrating?

In 1978 little was known about EB. By 1981, we’d funded our first research project and in 1987 we funded the world’s first specialist EB nurse. Today, people suffering from the condition have access to expert medical care as well as practical and emotional support. 

Over 30 of the genes that cause EB have been identified. There are now over 50 DEBRA groups around the world supporting people suffering from EB and potential treatments for the condition are entering human clinical trial stage for the first time.

We’re closer to a cure than ever before 

Thanks to your support, we are funding research to find a cure for EB and improving the quality of life for people suffering from the condition here and now, including improving wound healing, finding better ways of managing the pain and chronic itching caused by EB and combating the aggressive and ultimately fatal form of cancer caused by EB. 

But there’s still a long way to go

We have a vision of a world where no one suffers from EB. Until then, we strive to improve the quality of life for the EB Community.

We work in partnership with the NHS to provide lifelong care to EB sufferers, including part funding specialist EB nurses and providing state-of-the-art facilities and equipment like the Rare Diseases Centre at St Thomas’ Hospital.

We provide practical, emotional and financial support to EB sufferers and their families, enabling them to access fundamental necessities, such as housing, education, employment and respite.

Planning for the next 40 years

We need your support to carry on providing life changing care to people suffering from EB and funding research to find effective treatments and a cure for this potentially fatal condition as soon as possible. We receive no government funding for our work. 

Please give a regular donation now to #FightEB

Together we fight EB, together we will beat EB. Thank you.

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