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Celebrating European Patients Rights Day
This important day takes place on the 18th of April: it is a marked occasion for open discussion and serves to reinforce commitment to the 14 rights established for…
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We join forces with EB reference centres across Spain
The University Hospital of La Paz in collaboration with the Butterfly Children’s Charity hosted the II Multidisciplinary EB seminar for the second consecutive year. This meeting of…
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The Butterfly Children’s Charity visit Ceuta to train National Health Care medical professionals
DEBRA nurse, Esther and social worker, Juanma travelled to Ceuta to deliver information on EB to health care professionals with the collaboration of the National Institute for…
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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
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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. …
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Epidermolysis Bullosa demands the improved access to healthcare and education
The 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…
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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
In 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…
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Parent carers for infants and children with Epidermolysis bullosa will now receive financial assistance for loss of income due to reduced working hours
As of immediate effect, parents of children with cancer or other serious illnesses like EB, who require care at home, will now be able to claim benefits for their…
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