Epidermolysis Bullosa (EB) is a rare and painful genetic condition, and in Vietnam, around 1,000 patients have been identified. For children living with EB, every day brings physical and emotional challenges.
The URGO Foundation aimed to build a sustainable support network for EB patients in Vietnam, ensuring families receive continuous guidance and healthcare professionals gain the skills needed to deliver better care.
Creating Change Through Education and Community Support
On November 16, a first meeting was organized in Hai Phong, gathering over 100 EB patients, families, and caregivers. The event focused on practical wound care and emotional support, and marked the official announcement of Debra Vietnam’s creation.
Later, on November 28, the URGO Foundation held an EB Healthcare Professional Training Event in Hanoi, in collaboration with the Vietnam Pediatric Association. More than 70 healthcare professionals, including pediatricians, dermatologists, and wound-care specialists, received evidence-based knowledge and hands-on techniques to improve EB care nationwide.
The objectives were to increase awareness and understanding of EB, improve wound-care skills for patients and professionals, and build a strong collaboration network paving the way for government support, including potential national health reimbursement coverage.
Partners included Niềm Tin Charity Group, now officially recognized as Debra Vietnam.
Ensuring Continuity
The transition from Niềm Tin Charity Group to Debra Vietnam was a key step to ensure sustainable support for the EB community in Vietnam. Debra Vietnam will provide an official platform to align training materials and care standards with Debra International. As a globally recognized organization, it also strengthens credibility to access international funding and expertise. Most importantly, Debra Vietnam will bring greater legitimacy to support and contribute to the development of government support policies for children living with EB.
Voices from the Community
“I would like to express my sincere thanks to the URGO Foundation for accompanying the EB children in Vietnam. I hope it will continue to grow stronger. May God bless everyone in your company with peace and goodness.”— Mr. Thang, father of An, a child living with EB
“EB children are incredibly resilient, and the people who care for them—Debra volunteers, parents, nurses, and KOLs—have the warmest and most dedicated hearts. Being able to collaborate with such meaningful individuals and witness their strength makes this project emotionally rewarding and reinforces our determination to continue this work.”— Quan TA HOAN THIEN, Project Manager – URGO Foundation Vietnam
We believe that every action we take should create real impact for patients. This is especially true for children living with Epidermolysis Bullosa, who endure both physical and emotional pain every single day. Supporting them is not only aligned with our mission—it is a moral responsibility that motivates us profoundly.
