On June 29, 2024, the “Nursing and Support Training for Epidermolysis Bullosa Patients”, organized by the international organization Debra and supported by the URGO Foundation, was held at the Oriental Sports Building in Shanghai’s Pudong district. The event brought together Chinese medical experts specializing in EB (Epidermolysis Bullosa) to offer nursing lectures and training sessions for EB patients and their families.
Guest experts included:
- Yuan Hao, neonatal nurse at the Children’s Hospital Affiliated to Shanghai Fudan University.
- Dr. Chen Fuying, from the dermatology department of the same hospital.
- Members of the EB Multidisciplinary Consultation Team (MDT) at Shanghai Fudan University Children’s Hospital.
The Fondation URGO played an active role throughout the event
Mr. Zhou Yingchun, president of the center and EB consultant, spoke at the training session. He highlighted a significant increase in the number of patients registered at the center, attributed to greater awareness of EB in hospitals and the growing importance of genetic testing among the general public. These environmental changes have played a key role in this increase, making Debra’s work all the more essential.
Subsequently, the experts present, including Yuan Hao, Dr. Chen Fuying, and the multidisciplinary team, presented wound treatment and management methods to relieve itching in EB patients. Ms Zou Shanshan, representative of the URGO Foundation, also presented the Foundation’s actions, while other companies introduced their respective initiatives.
Learning and training for better care
An interactive nursing workshop was specially set up by Debra. Yuan Hao demonstrated nursing techniques by inviting EB patients to participate. She helped several patients relearn specific care techniques, while sharing clear and detailed guidelines. Participants gained skills in “exemplary care”, answering questions and sharing experiences. These exchanges led to spontaneous discussion circles, where each member was able to deepen his or her knowledge of EB care.
In conclusion, the EB patient family representatives expressed their satisfaction. They gained in confidence to better understand and communicate about medical technologies, received professional advice and corrected certain preconceived ideas. Families also asked for visual tools (graphs, images or videos) to help them better understand the evolution of wounds and improve their day-to-day management. The event reinforced the confidence of families and patients in their ability to navigate the complex care pathways of EB, while highlighting the importance of education and support in improving their quality of life.
*Debra: (Dystrophic Epidermolysis Bullosa Research Association) is an international organization dedicated to support, research and awareness around epidermolysis bullosa (EB), a rare and disabling genetic disease.
