Latest news

  • Butterfly Children’s Charity Golf Tournaments 2022

    The Butterfly Children’s Charity golf tournaments ang galas return after two years of cancelled galas due to the coronavirus pandemic.  These tournaments are vital for raising awareness and important funding which contribute directly to improving the quality of life for families with EB. The charity is delighted to announce that the first tournament will take […]

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  • New gene therapy for EB

    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) […]

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  • By your side in hospital

    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 […]

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  • 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

    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 […]

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