The DEBRA Spain association manages charity shops in several Andalusian cities, including Sevilla, Málaga, and Marbella. The proceeds are dedicated to financing comprehensive support for individuals with epidermolysis bullosa (EB), commonly known as 'butterfly skin'. This rare and incurable genetic condition causes extreme fragility of the skin and mucous membranes, requiring constant and costly care.
In Spain, EB affects over 500 people, who need daily treatments, wound care, and bandages, often involving significant pain. Families also require additional support such as physiotherapy or speech therapy, which are not always uniformly available across all autonomous communities.
These establishments, selling donated items like clothing, toys, and costume jewelry, operate thanks to the efforts of approximately 300 volunteers. The funds raised directly contribute to financing specialized staff, including nurses, psychologists, and social workers, who provide ongoing support to families from diagnosis throughout their lives.
“"Everyone who collaborates with the Butterfly Skin shops, whether by bringing items for sale, donating time as volunteers, or purchasing, makes it possible for families to receive support."
The headquarters of DEBRA Spain is located in Marbella, the city where Íñigo, the first patient with epidermolysis bullosa recognized by the Spanish Social Security, was born. The country has two national reference hospitals for this condition: La Paz in Madrid and Sant Joan de Déu in Barcelona.
The reach of DEBRA Spain extends beyond national borders. Through the 'EB Sin Fronteras' project, launched in 2019, the association offers clinical advice and emotional support to patients and professionals from other countries via video calls, as well as guidance on immigration matters. In 2025, they assisted 51 foreign patients from 24 countries, predominantly Latin American.
Among the Spanish affected individuals is Leo, a 12-year-old boy from Sevilla who has spoken at events to raise awareness about the disease. His daily routine includes a wound care session lasting about an hour, described as very painful, and at school, he fears playing due to the risk of new wounds from minor bumps.
DEBRA España also organizes national family gatherings and participates in international conferences of the global epidermolysis bullosa network to share knowledge and improve care for those living with the disease.
