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 European citizens. These rights were established to encourage the cooperation between the different health care providers and to reinforce the degree of protection for patients affected […]
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 representatives from both La Paz and the San Joan de Deu hospital represents a significant milestone in raising awareness for EB and the importance of specialist training for […]
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 health (INGESA). It is essential to raise awareness amongst medical professionals within the National Health Service as this contributes to improving the quality of care available for families. […]
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 Phong in Vietnam along with two […]
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 it means to live with the disease […]
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 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 […]
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 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 […]
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 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 […]