DEBRA was established in 1978 by Phyllis Hilton, whose daughter Debra had epidermolysis bullosa (EB), as the world’s first patient support group for people living with EB.
Today DEBRA UK is a national charity supporting 3,800+ members, which includes people living with EB, relatives, partners, or carers of someone with EB, healthcare professionals and researchers who work with EB.
DEBRA UK employs over 370 staff and 1,000+ volunteers who support us across a network of 90+ charity shops located throughout England and Scotland. In 2023, our volunteers provided over 211,000 hours of their time for free, saving the charity over £2.2 million.
DEBRA UK exists to provide care and support to improve quality of life for people living with EB, and to fund pioneering research to find effective treatments and, ultimately cure(s) for EB.
Our vision is for a world where no one suffers with EB, and we will not stop until this vision becomes a reality.
From discovering the first EB genes to funding the first clinical trial in gene therapy, we have played a pivotal role in EB research globally and have been responsible for making significant progress in advancing diagnosis, treatment, and daily management of EB.
We are committed to making sure that the estimated 5,000+ people living with EB in the UK and their families and carers get the vital and wide-ranging support they need.
The income we generate from our fundraising activities and our network of charity shops, enables us to provide care and support to improve the quality of life for people living with EB today, and fund pioneering research to find treatments and cure(s).
Albi was born with a rare condition called Severe Recessive Dystrophic Epidermolysis Bullosa (RDEB - GS). This is an extremely rare and incredibly painful genetic skin disease, with only 38 others suffering with the Severity within the UK that Albi suffers with (RDEB).
Albi is the only person in Wales that has this severity, where there is no Collagen V11 present, meaning there are the hooks to keep your skin together. The slightest knock or friction caused by normal everyday activities will cause the skin to blister and/or shear.
The severity that Albi has affects him both internally and externally meaning blisters also form on his eyes which can be caused simply from the wind, he also gets blisters & swelling in the mouth and oesophagus from any friction caused by food or drinking, resulting in his oesophagus being stretched which he has already had done.
Without a cure those with severe forms of EB like Albi are at a high risk of developing an aggressive form of skin cancer - Squamous cell carcinoma (typically in their 20s) which is fatal. Albis daily routine involves up to 2 hours of bandaging to protect his Butterfly Skin.
Please watch the video, and if you can give a donation or buy a ticket, you wil be helping Albi and others like him.