Towards a better management of Epidermolysis Bullosa in China

Towards a better management of Epidermolysis Bullosa in China

Towards a better management of Epidermolysis Bullosa in China 1144 940 The Urgo Foundation

In a concerted effort to enhance understanding and treatment of Epidermolysis Bullosa (EB)* among healthcare professionals, the Urgo Foundation, in partnership with DEBRA** and Beijing Children’s Hospital, held the Epidermolysis Bullosa Forum and Multidisciplinary Management Seminar on Children’s Wound on November 18th.

Under the chairmanship of Xu Zhe, director of Beijing Children’s Hospital, medical professionals, Debra representatives, and EB patient families gathered to facilitate dialogue and knowledge exchange.

The conference emphasized the essential role of communication between stakeholders to improve EB care. Medical professionals gained insights into patient needs, while patients learned about innovative treatment plans. This collaborative effort fosters advancements in EB treatment and awareness promotion.

Debra’s director Sun Chunyang presented an overview of EB in China, the organization’s mission, and ongoing awareness initiatives. A video featuring EB patient families provided insight into their challenges and their living conditions, evoking a deep sense of empathy among attendees.
Medical experts from dermatology, plastic surgery, and wound clinics then shared treatment methods for pediatric wounds in different disciplines and discussed tailored approaches to assist EB patients.

Following the event, Beijing Children’s Hospital invited the director of DEBRA and URGO Foundation’s representatives to visit the hospital. This visit showcased the hospital’s specialized clinics and wards dedicated to EB care, fostering optimism for future partnerships in advancing EB nursing practices.

* Epidermolysis bullosa is a group of rare diseases that make the skin fragile and blister easily. Skin tears, sores and blisters occur when something rubs or bumps the skin. They can appear anywhere on the body. In the most severe cases, blisters can also appear inside the body, including in the mouth, esophagus, stomach, intestines, upper respiratory tract, bladder and genitals.

** DEBRA is a non-profit organization that supports children and adults suffering from epidermolysis bullosa.