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
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
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
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
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
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
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.
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