After publication of the article in “Nature Medicine Magazine” on the new gene therapy treatment for recessive dystrophic EB, DEBRA are delighted to bring you further information on this exciting new discovery. What is B-VEC? This is a non-invasive gene therapy, which is applied directly to the skin. The therapy uses an inactive virus (HSV-1) […]

This service is an initiative that was created to train, support and advise both families and medical teams at the EB reference centres of the University Hospital of La Paz in Madrid and the Sant Joan de Deu hospital in Barcelona.  We take a holistic approach to this service with the participation of the nursing […]

This organisation is the only support group for families with Butterfly Skin in Spain: a rare and incurable disease, which currently affects more than 500 people in Spain.  It is characterised by the extreme fragility of the skin, leading to lifelong pain and disability.   A short documentary and a series of videos published on […]

At DEBRA we believe it is fundamental to be there to support families who have given birth to a baby with Butterfly Skin: to be there at their side, to help at this extremely challenging time and to ensure that all of the medical staff are fully up to date with the latest care procedures […]