Epidermolysis bullosa or Butterfly Skin is characterised by the extreme fragility of the skin and carries a high risk of aggressive skin cancers for patients. Scientists from CIEMAT, UCSM and CIBERER in collaboration with the institute for research at the Jimenez Dias Foundation and the University of Stanford in the
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
The funding will be used to improve the quality of life for families with Epidermolysis bullosa, a rare and currently incurable disease that affects 500 people in Spain. The charity was delighted to hold this tournament after 5 long months of cancelled events due to the Coronavirus crisis. After months
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
Miriam is one of our greatest treasures. She is a specialist nurse and is a key member of our team. With news of the lockdown and the rising number of people affected by COVID-19, Miriam joined the group of front line health care professionals fighting against the virus. We are
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