DEBRA on the road
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 hospital or to undergo surgery, […]
The National Health Service deny home nursing care to 6-year-old twins with Butterfly Skin (Epidermolysis bullosa)
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 care centre Santa Mónica de […]
DEBRA Butterfly Children’s Charity is appealing to government agencies to cover the cost of the much needed, specialist, EB team of nurses that work tirelessly to support and care for children with Butterfly Skin
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 and greater financial support. Within […]
Celebrate with us: join the 304 families with Butterfly Skin in Spain
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 who have to live with […]
After the success of the Guadalmina event held earlier in the summer, the Butterfly Children’s Charity raised more than €17.000 at the Aloha Golf Club Tournament
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 of uncertainty the Butterfly Children’s […]
Celebrating European Patients Rights Day
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 of protection for patients affected […]
“It is really hard, but I take strength from working with a team”
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 very much looking forward to […]
We join forces with EB reference centres across Spain
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 importance of specialist training for […]
We join the International Awareness Day for Rare Diseases and consolidate our relationship with CIBERER
Today, 29th of February 2020, we join the campaign created by the Spanish Federation for rare diseases (FEDER) “Our hope grows with you” to celebrate world awareness day for EB. With this we would like to underline and communicate the importance of equality when it comes to accessing treatments and care. This must be of […]
The Butterfly Children’s Charity visit Ceuta to train National Health Care medical professionals
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 of care available for families. […]