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Family members play a leading role in making important changes to the provision of healthcare available
Read moreIn 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 it means to live with the disease […]
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An exciting breakthrough in a new skin regeneration treatment
Read more50% 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 of skin grafts has now […]
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Epidermolysis Bullosa demands the improved access to healthcare and education
Read moreThe Debra Butterfly Children’s charity joins the Spanish Federation for rare diseases (FEDER), on International Rare Diseases day, to underline the importance of their claim that asks for people with EB the right to attend schools and higher education establishments where their needs are recognized. This must be specialized and met by a team of […]
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Training Matters: The La Paz Hospital focuses on teaching to improve the care available for people affected by the rare disease, Epidermolysis bullosa
Read moreIn collaboration with the DEBRA, the Butterfly Children’s Charity, the University Hospital of La Paz (one of the official reference centres for the disease) organized a structured training day for national healthcare professionals, on the best treatment and care options available for patients affected by this relatively unknown rare disease. During the course of the […]