HOME • ABOUT US • ANNUAL REPORTS AND PUBLICATIONS
Latest news
-
New gene therapy for EB
Posted on 10 May, 2022Read moreAfter 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) […]
-
By your side in hospital
Posted on 11 February, 2022Read moreThis 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 […]
-
DEBRA the Butterfly Children’s Charity is pleased to launch the “Living with Butterfly Skin” campaign: a documentary that encourages you to empathise with a family with Butterfly Skin
Posted on 25 October, 2021Read moreThis 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 […]
-
DEBRA ON THE ROAD: Home visits between May and July
Posted on 30 August, 2021Read moreAt 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 […]