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Supporting people with Epidermolysis Bullosa in Vietnam and Cuba
Read moreDEBRA 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 Phong in Vietnam along with two […]
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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 […]