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Piel de Mariposa

Queda mucho camino por recorrer, ayúdanos a conseguirlo

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Winners of the Albert Jovell prize for the #IHAVEUNDRESSED campaign

We were delighted and honoured to receive a prize valued at 1500€ for the #IHAVEUNDRESSED campaign under the category of “A Campaign aimed specifically at raising awareness and developed by a charity in the health sector” More than 400 people attended the prize-giving event at the Nouvel auditorium at the

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Supporting people with Epidermolysis Bullosa in Vietnam and Cuba

DEBRA in Spain is the founding member of the international network of DEBRA groups supporting people with EB in countries where the support system is currently inexistent.   Our network includes “DEBRA without borders” which is made up of a group of professionals and volunteers who travel beyond their frontiers to help others.    Visiting Vietnam  The co-coordinator for family support from Australia, Simone Baird, travelled to Hai

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Family members play a leading role in making important changes to the provision of healthcare available

In the last few weeks some of our most courageous family members have laid claims to improving on the current injustices with regards to available free treatments and care for people with EB on the National Health system.  From Andalucía to Cataluña we have been able to participate in some key debates to educate and influence the health authorities: To inform and educate on the severity of this condition, what

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An exciting breakthrough in a new skin regeneration treatment

50% of the people in Spain with dystrophic recessive Epidermolysis bullosa (EB) share the same genetic mutation in a very specific gene.  The consequence of this mutation is that the collagen protein does not develop correctly.  This affects the skin structure and the adhesion between the layers of the skin, leading to blistering and open wounds.  An encouraging new study has demonstrated that it is possible to correct the faulty genes. The procedure (CRISPR/Cas9)which involves the use

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