About the Association
We are the reference Association at the national level in Epidermolysis bullosa or Butterfly Skin and we have the declaration of Public Utility by the Ministry of the Interior. In the team we are now 38 people motivated by the same cause and working with the same spirit with which the Association was founded.
Thanks to the common effort of the associated families, the team and the large number of volunteers and collaborators, many goals have been achieved. Today we continue working to achieve many others.
How it all started?
In 1993 Nieves Montero and Íñigo de Ibarrondo founded the DEBRA-BUTTERFLY SKIN Association when their first child was born with Epidermolysis bullosa disease, more commonly known as Butterfly Skin. The lack of knowledge about the condition, both on their part and that of the professionals who cared for the child, as well as the uncertainty and desolation they experienced, led them to create a point of reference and union so that no other affected family would walk alone. Nieves and Íñigo assisted the families who contacted the Association and made it possible for them to meet and help each other. In 1998, there came a time when the number of families in the Association had grown so much that, in order to safeguard and continue with the work that was being carried out, they had to hire the first professional of the entity, something they did with their own funds. Through this professionalization, the funds that have allowed us to continue offering and improving support were secured.
That there is no one in the world who suffers from Butterfly Skin.
Improve the quality of life of people with Butterfly Skin and their families.
Commitment, humanity, proximity, professionalism, perseverance, transparency, impartiality, credibility, involvement in social justice, nonconformity and economic, religious and political independence.
As an Association we know that union is strength. We were lucky enough to be founders and members of DEBRA International, the network that brings together all the entities that, like ours, work every day to improve the quality of life of people with Butterfly Skin in all corners of the world.
In addition, we are members of:
· The Spanish Federation of Rare Diseases, FEDER.
· The European Organization for Rare Diseases, EURORDIS.
· The Platform of Patient Organizations.
· The International Network for Butterfly Skin Professionals, EB Clinet.
· The International Network of DEBRAs, DEBRA International.
· The Spanish Patient Forum.
We also collaborate with the Rare Diseases Network Biomedical Research Center, CIBERER and with the Carlos III Health Institute.
Meet the Team below –