In China, alongside the most vulnerable

For the past 10 years, the URGO Foundation has been working alongside Epidermolysis Bullosa sufferers in China. In keeping with this tradition, it renewed its support on 17 May in Tianjin City, alongside families in the north of the country, through a dedicated training programme.

An orphan disease that is still little understood

Epidermolysis Bullosa (EB) was one of the first diseases to be listed in China’s catalogue of rare diseases. A genetic disease, it is characterised by extreme fragility of the skin, and sometimes the mucous membranes, which can appear from birth.
The Chinese branch of the international Debra association, which works alongside patients, has registered 1,500 cases in China.

Complex care essential

In the absence of curative treatments, and faced with the need for long, complex and painful daily care, it is crucial to support families in their role as carers.
In partnership with Debra China, the URGO Foundation brought together 15 families in a province of northern China, offering them a space to discuss their practices, share their difficulties and benefit from advice.
Dermatologists and a neonatal chief nurse were on hand to guide parents and show them how best to manage wounds and prevent infections.

Strengthening skills in the medical world

The meeting was also an opportunity to mobilise 15 local medical staff.
After an introduction by Zhou Yingchun, Director of Shanghai Debra, on the current situation of EB in China, the participants attended a targeted training session on the diagnosis and consensual treatment of wounds.
Representatives from genetic research joined the audience.

To overcome the physical and financial obstacles associated with travelling, the Fondation URGO is committed to meeting patients in their own region. This is a practical way of providing ongoing support, as close as possible to what is needed.