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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 […]
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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
Read moreAs 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 loss of income. Up until recently this could only be claimed if the child was hospitalized. In this important move, EB has now been added to […]
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New Charity Shop opening in Barcelona!
Read moreMore than 100 people gathered to celebrate the opening of the new Charity Shop in the city of Barcelona. Inspired by the English charity shop concept this new shop is an important way of raising awareness for Epidermolysis Bullosa, providing people with the opportunity to learn about what it is really like to live with […]
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Thanks to the #IHAVEUNDRESSED campaign millions of new people know what it is like to live with this disease
Read more#IHAVEUNDRESSED was launched to raise awareness worldwide for EB, in the hope that the day to day of living with this condition can be made just a little bit less painful. Since the launch of the campaign on the 25th of October (timed to coincide with International EB day), it has now reached millions of […]