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…

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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…

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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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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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