The Carrefour Foundation financed the acquisition of the equipment for a paediatric unit for patients with Epidermolysis bullosa at La Paz University Hospital, (an important national reference centre for EB) that currently attends to approximately 50% of people with EB in Spain, the majority of these are children. The Carrefour

Our specialist team has continued to work despite the global pandemic, ensuring that families are supported with access to remote advice at all times.  Some cases require urgent care and face to face attention: the birth of a baby with Butterfly Skin, when a child needs to be admitted to

Carla and Noa have a rare, degenerative and incurable disease that causes extreme fragility of the skin.  They are subjected to painful daily treatments that can last up to four hours.  These treatments are required to disinfect and bandage the open wounds and blisters covering their entire body.   Health

These costs are currently met by the charity:  DEBRA Spain is the only national support system available for families with Butterfly Skin:  a rare and currently incurable disease that causes extreme fragility of the skin.  The charity is also bidding for further investment into research and appealing for more commitment

304 families: the most recent campaign launched by the Debra Butterfly Children’s Charity to raise awareness for children with Epidermolysis Bullosa. Known as the most painful condition you have never heard of.  EB is a rare and extremely debilitating disease that gives no respite over the festive season for families