On September 28, in Sichuan province, the URGO Foundation and the Debra patient association brought together children with epidermolysis bullosa, their families, and healthcare professionals for a day dedicated to this rare disease. It was a moment of care, listening, and hope.
The aim of this exchange was to encourage meetings with experts in the field, in order to share practical advice on improving daily care and patient well-being.
A rare disease
Epidermolysis bullosa (EB), also known as “butterfly disease,” is a rare genetic disorder that causes the skin to be extremely fragile from birth. It manifests itself in the first days of life, can reduce life expectancy in its most severe forms, and is characterized by skin as delicate as a butterfly’s wings.
The necessary care is long and demanding: from one to four hours a day, with special dressings and bandages that can cover the entire body. This care is often provided by family members or nurses, in an emotionally and physically challenging context.
EB is considered a rare disease because it affects less than one in 2,000 people. In China, 1,657 people have been diagnosed out of a population of over 1.4 billion.
This figure is too low to mobilize public policy or encourage medical specialization.
This poses a challenge for diagnosis and treatment.
Sharing best practices
To reduce inequalities in access and contribute to knowledge sharing, the URGO Foundation and Debra visited Sichuan Province in southwestern China. Over the course of a day, 40 families participated in sessions led by two dermatologists and a specialized nurse. The program included presentations on the different forms of EB, advances in research, and appropriate care protocols. Practical workshops demonstrated the essential steps for changing dressings, relieving pain, and promoting healing.
Individual interviews rounded out the day, offering each family personalized advice on how to better support their child on a daily basis.
The event was supported by leading institutions such as West China Hospital (ranked among the top five hospitals in the country), the Pediatric Hospital affiliated with Fudan University in Shanghai, and the Nursing Department of the Shanghai Pediatric Medical Center.
At the URGO Foundation, we believe that every patient deserves access to the best care to improve their quality of life.
That is why, since its creation 10 years ago, the Foundation has been working alongside the Debra association in China to train healthcare professionals, patients, and their families in the care appropriate for this complex and little-known condition.
