On April 13, 2024, the launch ceremony of the "Touching Life Warmth Together" caring butterfly baby public welfare project jointly initiated by Zhende Medical and Shanghai Debo Butterfly Baby Care Center was successfully held in Shaoxing, Zhejiang at Zhende Medical's 30th anniversary celebration. This public welfare project, Zhende, not only provides economic and product assistance to patients with EB (hereditary epidermolysis bullosa) to alleviate their medical and living burdens, but also strives to improve public awareness and understanding of EB disease, allowing more people to understand the symptoms, treatment, and daily care knowledge of EB disease, and encouraging all sectors of society to pay attention to and support this rare disease group.
Butterfly Baby
Butterfly Baby is the nickname for patients with Hereditary Epidermolysis Bullosa (EB). The patient's skin and mucosal tissues such as eyes, mouth, esophagus, and respiratory tract will develop blisters or blood blisters after slight friction, leading to wound ulceration, and the skin is "as fragile as butterfly wings". There is no cure for this disease, and the patient's skin is repeatedly injured, enduring immense pain for life. But using high-quality wound care products (dressings) can significantly improve the quality of life of patients.
According to the statistics of the United States in 2002, the neonatal incidence rate and prevalence rate of EB were 20 per million and 11 per million, respectively, of which about 54% were simple (EBS) patients, 4% were borderline (JEB) patients, 29% were malnourished (DEB) patients, and 12% were not clearly diagnosed. But countries with smaller populations such as New Zealand and Chile have a prevalence rate of around 50 parts per million. The German study in 2022 shows that the neonatal incidence rate is 45 per million, and the estimated prevalence rate is 54 per million. According to the prevalence rate of 11 per million in the United States, the number of patients in China may be around 15000. By early 2024, there will be approximately 1400 patients registered at the Shanghai Debo Butterfly Baby Care Center.
At the celebration, the public welfare project theme film "Dear Butterfly Baby" jointly planned and produced by Zhende Medical and Butterfly Baby Care Center premiered and was released, touching the hearts of every guest present and triggering strong resonance. Through realistic and delicate lenses, people deeply feel the pressure and difficulties that EB patients and their families endure, while also showcasing their strong, optimistic, and positive attitude towards life. Zhende Medical also hopes that the release of this public welfare themed film will enable more people to understand the real lives of EB patients in the future, and also raise awareness and care for the EB community from all walks of life.
Ms. Sun Chunyang, Director of Shanghai Debo Butterfly Baby Care Center, stated in her speech that the center's mission is to continuously improve the quality of medical care, life, learning, work, and social interaction for EB patients and their families. Director Sun emphasized that the clinical treatment resources and nursing conditions for EB patients are still lacking, and there is an urgent need for attention and support from all sectors of society. Therefore, the center has joined hands with Zhende Medical to launch this public welfare project, aiming to raise more attention from enterprises and medical institutions to the "Butterfly Baby" group, and jointly help improve their living environment. The center will also steadfastly adhere to its original intention, continue to speak out for the EB patient group, gather all forces, and achieve the long-term goal of significantly improving their quality of life.
Sun Chunyang, Director of Shanghai Debo Butterfly Baby Care Center
At the public welfare launch ceremony of the 30th anniversary celebration of Zhende Medical, EB patient Li Qianyuan and her parents were invited to attend. Li Qianyuan greeted the guests on site with a naive yet firm voice, showcasing her brave and optimistic side. Ms. Yang Yanfeng, the mother of Qianyuan, expressed her gratitude for participating in this public welfare project during her speech. She thanked Zhende Medical and society for their care and support, and encouraged all butterfly babies like Qianyuan to face life with strength and optimism.
EB patient Li Qianyuan and her father (Li Xiaoqiang), mother (Yang Yanfeng)
In addition, an adult EB patient named Zhang Jian was invited to the scene, who shared the current situation of personal life care from the onset of the disease to the present, and expressed his expectation for more resources to support the EB patient group in the future. His sharing deepened the understanding of the difficulties and needs of EB patients among those present, and also strengthened Zhende's determination to continue paying attention to the EB patient community and supporting public welfare undertakings.
EB adult patient Zhang Jian
At the launch ceremony, Shen Zhenfang, Vice Chairman of Zhende Medical, Li Jie, Vice President and General Manager of Domestic Marketing Center, Wang Zhihong, National Marketing Director, Zhou Yingchun, Chairman of Shanghai Debo Butterfly Baby Care Center, and Sun Chunyang, Director, took the stage together to launch this far-reaching public welfare project. The launch of this project marks Zhende Medical's unwavering commitment to public welfare, working together with the Butterfly Baby Care Center to provide more comprehensive and in-depth support and assistance to the EB patient group. Zhende Medical hopes to further raise awareness and care for EB patients from all sectors of society through such public welfare activities, allowing them to deeply feel the warmth and power from society, and jointly build a sky full of love and hope for these special "butterfly babies".
Wang Zhihong, National Marketing Director of Zhende Medical, Li Jie, Vice President and General Manager of Domestic Marketing Center, Sun Chunyang, Director of Butterfly Baby Care Center, Zhou Yingchun, Chairman, and Shen Zhenfang, Vice Chairman of Zhende Medical (from left to right)
After the project was launched, in the presence of more than 500 attending guests, Shen Zhenfang, Vice Chairman of Zhende Medical, and Zhou Yingchun, Chairman of Butterfly Baby Care Center, completed the first donation ceremony. At the same time, in order to support Butterfly Baby's daily care and their artistic dreams, Zhende Medical specially claimed the public welfare work "Rooster", and the proceeds will be used for the author's life and care assistance and support. At the same time, Zhende also hopes that all EB patients can maintain a brave, tenacious, and fighting spirit like a proud rooster, and bravely face life.
Zhou Yingchun, Chairman of Shanghai Debo Butterfly Baby Care Center (left), and Shen Zhenfang, Vice Chairman of Zhende Medical (right)
Butterfly Baby Painting: 'Rooster'
In this public welfare project cooperation, Zhende Medical not only donates funds specifically to the Butterfly Baby Care Center to support its daily operation and development. At the same time, 200 love care packages were donated, which contain the daily care supplies needed by EB patients, providing them with more caring care. Looking ahead to the future, Zhende Medical will also work with retail channel partner Jianzhijia Pharmaceutical Chain Group to jointly carry out public welfare baby project cooperation, bringing more hope and strength to these special "butterfly babies".
At this special moment, Yang Yanfeng, the mother of Qianyuan, also brought a blessing for Zhende that spans more than 2000 kilometers and was presented to Shen Zhenfang, the Vice Chairman of Zhende. This work is a Yi embroidery - Zhende 30th anniversary logo that she personally embroidered, expressing her blessings for Zhende Medical in every stitch and thread. She is not only the mother of EB patients, but also a strong and brave woman. Zhende Medical hopes that this blessing can also bring endless strength and hope to the Qianyuan family and more EB patients.
Family member of EB patient Yang Yanfeng (mother of Li Qianyuan)
During the filming of the public welfare video, Zhende Medical specially prepared a love gift package for EB patient Li Qianyuan. The gift package contains the most needed wound care products of Qian Yuan, such as acetate fiber gauze and polyurethane foam dressings, which can effectively alleviate the wound discomfort of Qian Yuan and promote the wound healing. In addition, there are also some personal care products and stationery supplies, and Zhende Medical will continue to provide necessary nursing supplies support for Qianyuan in the future.
Zhende Medical donates a love gift package to Qianyuan
After thirty years of ups and downs, as a member of the medical industry, Zhende Medical has always taken "making a healthy life within reach" as its responsibility, providing high-quality medical services for patients. At this important moment, Zhende not only reviewed its own growth process and industry contributions, but also turned its attention to social welfare undertakings, conveying love and warmth through practical actions, and interpreting the company's social responsibility. This cooperation with the Butterfly Baby Care Center is an important manifestation of the company's commitment to social responsibility and giving back to society. In the future, Zhende Medical will continue to pay attention to and support the development of public welfare undertakings, and provide assistance to more EB patients in need within its capabilities.
At the same time, Zhende Medical also calls on more enterprises and individuals to join the public welfare cause and contribute to the help and support of the rare disease community. I believe that with the joint efforts of society, EB patients will be able to receive more care and support, and bravely move towards the future.