We are the only national, registered charity for people affected by Epidermolysis bullosa or EB in Spain. The team is made up of 38 people all working tirelessly for children with EB and their families.
Thanks to the efforts of the families, the team and the rising number of volunteers and collaborators, we have achieved so much. Today we are working hard to achieve much more.
Our board is made up by: Nieves Montero, Mª Eugenia Pérez, Inés Padilla, Carlos Triay y Javier González.
How did it all start?
Nieves Montero and Iñigo Ibarrondo founded DEBRA, The Butterfly Children’s Charity in 1993 with the birth of their son, born with Epidermolysis bullosa. The lack of available information from the health care professionals who looked after their baby and the distress and grief they experienced at the birth of their child led them to create the support centre in Spain, so that no other affected family would have to walk alone.
Nieves and Iñigo looked after the families who contacted the charity and made it possible for other families to connect and support each other. In 1998 the number of families had grown to such an extent that in order to safeguard the charity and continue with their work they recruited the first paid, professional person to work for the organization. They paid for this themselves. It was from this moment that fundraising work began so that we could continue to offer the services and support, which are so important to families with EB.
To live in a world free from EB
To improve the quality of life for people with EB
Commitment, humanity, closeness, professionalism, perseverance, transparency, impartiality, credibility, involvement in social justice, and economic, religious and political independence.
As an organization we know that unity gives us strength. We are fortunate to be founding members of DEBRA International, the network that brings together all the different organizations from across the world who work tirelessly to improve the lives of people with EB.
We are also members of:
· The Spanish Federation for rare diseases, FEDER..
· The European organization for rare diseases EURORDIS.
· The national platform of organisations for patients.
· The international network for EB health care professionals, EB Clinet.
· The Spanish forum for patients.
We also collaborate with the Biomedic research centre for rare diseases, CIBERER and with the Carlos III Institute for health.