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…

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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…

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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. …

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DEBRA ON THE ROAD: Home visits between May and July

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,…

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The school for physiotherapy in Catalonia, the Butterfly Children’ Charity and Go2 have joined forces to offer physiotherapy to families with Butterfly Skin.

Physiotherapy plays a key role in improving the quality of life for people with EB: increasing movement and reducing the risk of permanent disability.  This collaboration is key for…

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DEBRA ON THE ROAD: Visits from our specialist health care team during April

When a baby with Butterfly Skin is born the whole family find themselves in a situation of confusion and desolation. Our aim is to be with families…

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Improvement on the accuracy of gene editing in the treatment for Epidermolysis bullosa

Epidermolysis bullosa or Butterfly Skin is characterised by the extreme fragility of the skin and carries a high risk of aggressive skin cancers for patients. Scientists from CIEMAT,…

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The Carrefour Foundation finances a specialist paediatric unit for wound care a La Paz Hospital for children with Butterfly Skin

The Carrefour Foundation financed the acquisition of the equipment for a paediatric unit for patients with Epidermolysis bullosa at La Paz University Hospital, (an important national reference…

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DEBRA on the road

Our specialist team has continued to work despite the global pandemic, ensuring that families are supported with access to remote advice at all times.  Some cases require…

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The National Health Service deny home nursing care to 6-year-old twins with Butterfly Skin (Epidermolysis bullosa)

Carla and Noa have a rare, degenerative and incurable disease that causes extreme fragility of the skin.  They are subjected to painful daily treatments that can last up…

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