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 […]

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 […]