Since its creation, the URGO Foundation has been committed to the fight against epidermolysis bullosa, a rare genetic skin and tissue disease. For years, it has brought its support to the DEBRA association, a non-profit organization that supports children and adults suffering from epidermolysis bullosa all around the world.
The recent annual meeting of the Burn Surgery Branch of the Shanghai Medical Association, held on November 24th, 2023, marked a crucial turning point in the recognition of EB in China. Traditionally focused on the treatment of pediatric burns, this year’s conference expanded its scope to include a special section dedicated to Epidermolysis Bullosa.
At the conference, DEBRA director Sun Chunyang delivered a presentation highlighting the current situation of Epidermolysis Bullosa in China. This included an overview of DEBRA’s mission, ongoing awareness initiatives, support programs for patients, and collaborations with Chinese hospitals. Dr. Chen Fuying from Shanghai Pediatric Hospital further elucidated the genetic aspects and clinical manifestations of Epidermolysis Bullosa, deepening the understanding of this complex condition among attending medical professionals.
Professor Liu Yan expressed that prior to the event, many doctors had limited knowledge of EB, with some having only heard about it without encountering real cases. However, through the comprehensive introduction provided during the conference, attendees gained invaluable insights into the disease and its management. The expertise of burn department physicians in skin treatment positioned them as potential allies in the care of Epidermolysis Bullosa patients, sparking enthusiasm for collaboration with DEBRA.
Following the conference, many hospitals expressed their will to become DEBRA’s cooperative partners, signaling a promising future for the treatment and management of this rare skin disease in China.
This landmark event not only facilitated face-to-face interactions between Epidermolysis Bullosa experts and burn surgeons but also fostered a spirit of collaboration and mutual support. The URGO Foundation ‘s instrumental role in facilitating communication and integration between previously disparate institutions was essential to raise awareness and understanding of the disease within the medical community.
