DEBRA is the national charity and patient support organisation for people living with or directly affected by epidermolysis bullosa (EB), also known as butterfly skin, an incredibly painful, genetic skin blistering condition. DEBRA does not receive statutory funding and relies on the income generated by its charity shops and fundraising activities to provide care and support for people living with EB, and to fund pioneering research to find effective treatments and ultimately, cure(s) for EB.

Where can I get more information about epidermolysis bullosa simplex?

DEBRA is the national charity and patient support organisation for people living with or directly affected by all types of EB including EB Simplex. DEBRA supports the EB community in the following ways:

Specialist healthcare
DEBRA works in partnership with the NHS to deliver an enhanced EB healthcare service which is vital for people living with EB. There are four designated EB centres of excellence around the UK providing expert specialist EB healthcare and support, as well as other hospital locations and regular clinics which aim to provide EB services to people wherever they are located.

Member services
The DEBRA Community Support team works with the EB community, healthcare, and other professionals to improve quality of life for people living with EB. They offer support, advocacy, information, and practical help at every stage of life. The DEBRA Membership scheme includes holiday home respite, grants, and bespoke events to support people living with EB.

Research to find treatments
DEBRA supports research programmes that aim to find treatments that will slow, stop, or reverse the progression of EB. Repurposing drugs which are already available and successful in treating other inflammatory skin conditions is a key part of its research programme.

For more information or to apply to become a DEBRA member, which is completely free, please visit www.debra.org.uk/support-membership, email membership@debra.org.uk or call us on 01344 771961.