Zoom on the National Epidermolysis Bullosa Patient Conference in China
On April 28th, the national EB* Patient Conference was held in Shanghai Children’s Medical Center. This conference was hosted by Debra (the EB care center in China) in partnership with the URGO Foundation. 30 EB families came from all over the country to attend this conference.
The conference began with speeches by Ms. Hong Li, Association President of the Shanghai Children’s Medical Center, and Mr. Li Ming, Association Chairman of Debra. Then, a representative of the EB patients’ family expressed her gratitude to all sectors of society for their long-term and consistent care for EB patients, allowing them to grow healthy.
An interview between Debra and the public welfare partners was the high point of the conference. As a long-term partner, the General Manager of Urgo Medical China, Michael Zhong, was invited to paticipate. He reminded the quality of the partnership between the URGO Foundation and Debra, which has been on for nearly 10 years in China, and highlighted the commitment of the URGO Foundation to support and train patients and health profesionals. A commiment that will be renewed in the long term to improve patient care and treatment outcomes.
Michael Zhong (the third on the left), GM of URGO China participate in the interview
The conference continued with lectures, with experts introducing finger splitting surgery, pain management, itching treatment, prenatal diagnosis, and other aspects to everyone.
At the same time, children were having fun playing various games with the volunteers.
Free physical examination and consultation activities were also held in the afternoon. Dermatology, ophthalmology, stomatology, nephrology, gastroenterology and wound care experts from Shanghai Children’s Medical Center, Fudan University Affiliated Pediatric Hospital, Shanghai Xinhua Hospital carefully examined the patients.
The EB families all expressed their gratitude and learned valuable and practical knowledge and skills in home care.
*EB : Epidermolysis bullosa is a group of rare diseases that cause the skin to be fragile and to blister easily. Tears, sores, and blisters in the skin happen when something rubs or bumps the skin. They can appear anywhere on the body. In severe cases, blisters may also develop inside the body, such as in the mouth, esophagus, stomach, intestines, upper airway, bladder, and genitals.
