French URFO Foundation continues support for Chinese EB patients

Thanks to a French foundation, Chinese Epidermolysis Bullosa children will have a chance to receive better treatment and the Chinese public will be more aware of these rare disease sufferers.

Pierre Moustial, Board Member of URGO Foundation makes a speech during the awarding ceremony in Beijing. [Photo provided to chinadaily.com.cn]

The URGO Foundation of France received an award from Chinese EB caring association, DEBRA China for its long-standing contributions to the care of Chinese EB children since the beginning of the partnership in 2015. The award was given at the French embassy in Beijing on Wednesday, Sep 20th.

The foundation is chaired by Hervé Le Lous, founder and chairman of the current URGO Group, a family-run French group specializing in health and wellness. The group has branches in 22 countries in Europe, Asia and the Americas.

Zhou Yingchun, director of the Chinese EB caring association, said URGO had helped the Chinese parents correct some wrongdoings when attending to their suffering children.

"There are more than 10,000 diagnosed patients in China," Zhou said. "People lack knowledge of this rare disease, and EB patients in China have difficulty finding proper medical care, education and employment."

Zhou Yingchun, director of the Chinese EB caring association makes a speech during the awarding ceremony in Beijing. [Photo provided to chinadaily.com.cn]

EB is a group of inherited connective tissue diseases that cause blisters in the skin and mucous membranes. It results from a defect in anchoring between the epidermis and dermis, which leads to friction and skin fragility.

Zhou, whose 14-year-old daughter is a patient herself, founded the caring center in 2014 and has been working with the foundation. From 2015 to 2016, more than 350 EB children among the 600 registered received treatment from URGO in the center.

There is no cure to this disease, and a current course of treatment is to wrap a wound to keep it sterile after disinfecting. URGO has donated 264,340 pieces of dressings to the center since 2015.

Pierre Moustial, Board Member of URGO Foundation said there must be more patients than are diagnosed in China, since it is such a populous country. He urged more attention from the government and the press to make the public more aware of the disease.

Ceremony participants and EB patient representatives take a group photo.[Photo provided to chinadaily.com.cn]

In France, according to Pierre, there is quite a large number of EB centers where patients can receive high-quality treatment. For those who have no access to the centers, patients can receive a prescription from doctors and get the drug from the nearest pharmacy.

"Here through the Chinese EB association, patients can get access to plasters for treatments, to the best doctors, to trainings," said Pierre, adding the foundation has distributed treatment guide books to Chinese parents.

Next, URGO will continue to work with Chinese hospitals to favor the creation of EB excellence centers in major cities like Beijing and Shanghai, where medical staff and relatives will receive better training to care for the patients.