Asociación “Piel de Mariposa” (AEBE) is a charity working on behalf of children with Epidermolysis Bullosa (EB), a rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub.It is fatal in the most severe cases and even in its mildest form causes lifelong disability and pain. There are currently 500,000 sufferers worldwide with one in 27 carrying the defective gene.

Whilst considerable progress has been made in recent years in understanding EB and identifying the genes that cause the condition, there is as yet no effective treatment or a cure.www.aebe-debra.org and for the International version: www.debra.org.uk

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