Unveiling of Suzhou Clinical Medical Center for Children’s Rare Diseases and Launching of Relief Program for Children with Rare Diseases
A child who always sleeps in class may suffer from a “Kleine-Levin Syndrome”.A child as good-looking as wearing makeup may suffer from a “Kabuki Syndrome”.A child that can eat up all foods in a fridge may suffer from a “Prader-Willi Syndrome”. These seemingly strange and even a little “cute” names are in fact names of rare diseases. Such diseases are generally chronic serious diseases that are often life-threatening. In 2020, there were 20 million patients of rare diseases in China. Common rare diseases include albinism, hemophilia and thalassemia. Behind every disease are countless suffering families.
On December 24, the unveiling ceremony of Suzhou Clinical Medical Centerfor Children’s Rare Diseases and Launching Ceremony of Relief Program for Children with Rare Diseases was held successfully at the Children’s Hospital of Soochow University, hosted by Rare Disease Commission of Jiangsu Research Hospital Association and Suzhou Industrial Park Charity Federation, organizedby Children’s Hospital of Soochow University and Yuanyuan Health Promotion Service Center of Suzhou Industrial Park, and co-organized by Suzhou BioX Life Intelligence Industry Institute and Suzhou Basecare Medical Corporation Limited. The ceremony was presided over by Wang Xiaodong, president of Children’s Hospital of Soochow University, and attended by Yin Guixia, director of the Department of Science & Education of the Health Commission of Suzhou, GuSanqiang, head of Business Service Bureau of Suzhou Industrial Park, Wang Jian,Party committee secretary, Yao Wei, a Party committee member, vice-presidents Tian Jianmei and Lv Haitao of Children’s Hospital of Soochow University and Liang Bo, founder of Suzhou Basecare Medical Corporation Limited.
Wang Jian, a Party committee member of Children’s Hospital of Soochow University, said, as the biggest children’s medical center in the south of Suzhou, the hospital had attached great importance to the research, diagnosis and treatment of rare diseases. By launching the “Suzhou Clinical Medical Center for Children with Rare Diseases”, it can integrate the advantaged resources of hospitals, allow the patients of rare diseases to “find doctors and hospitals, receive appropriate treatment, and be well-managed”, and allow the curable patients to receive early diagnosis and treatment and control the diseases of those patients incurable at present and give them more care.
He Lin, an academician of Chinese Academy of Sciences, delivered a speech via video. He first congratulated to the unveiling of the Clinical Medical Center and the launching of the relief program. In February this year, the team and the Children’s Hospital of Soochow University established a remote multi-disciplinary consultation platform and laboratory. In the future, they will have in-depth cooperation at the Clinical Medical Center and provide early diagnosis for children with rare diseases. Let’s join hands to promote the development of rare disease diagnosis and treatment and ensure the healthygrowth of the children.
Gu Sanqiang, director of Suzhou Industrial Park’s Social Service Bureau,delivered a speech, hoping that with the relief program being a start, they could focus on the group of patients with rare diseases and gather more strength to help more children with rare diseases get rid of their troubles and usher in a new chapter of cooperation between charity and medical institutions. He thanked everyone’s care and support for the Park’s charity and medical businesses all the time, and hoped that they could contribute more wisdom and strength to the co-building of a healthy life in the Park. He wished the event this time a big success.
Sheng Le, the Party group secretary and director of the Health Commissionof Suzhou, said that the general public should have more knowledge and practice in the area of rare diseases. The “early discovery and treatment” of rare diseases is very important. It is extremely urgent to improve the medical treatment level of main departments of rare diseases. We should support there searches of rare diseases, especially basic clinical research programs,encourage the combination of medicine and engineering and promote localization.He expressed gratitude for the support of the Suzhou team led by academician HeLin for the clinical researches over the time, and expected that related research achievements could be further applied and promoted to enhance the medical service capacity of Suzhou for rare diseases.
Later, Lv Haitao, vice president of the hospital, introduced in detail the specific progress of the two programs.
About “Suzhou Clinical Medical Center for Children’s Rare Diseases”
Since early 2021, the rare disease prevention and treatment group of the Children’s Hospital of Soochow University has been cooperating with the teamled by academician He Lin of Chinese Academy of Sciences to establish multi-disciplinary out patient services of the United Laboratory of Genetic Counseling and Artificial Intelligence and set up an integrated service platform of remote genetic counseling and offline multi-disciplinary consultation. Thus far, it has diagnosed and treated over 200 cases of children’srare diseases and provided more comprehensive and professional guidance for genetic counseling, diagnosis and treatment of rare diseases. Its diagnosis andtreatment of children’s rare diseases has reached an advanced level in the province, or rather, in the nation. The establishment of the Clinical Medical Center can further smoothen the channel between scientific research andclinical practice, promote the application and commercialization of scientific research achievements and build a high-level medical, industrial and researchbase of clinical research talents.
About the Relief Program for Children with Rare Diseases
The relief program is a charity program launched by the rare disease prevention and treatment group of the Children’s Hospital of Soochow University and the Yuanyuan Health Promotion Service Center of Suzhou Industrial Park and promoted by many medical and social workers, volunteers and loving enterprises.Aiming to “spread health concepts and teach health skills”, the program tries to set up a bridge among the society, hospitals, and poverty-stricken familiesof children with rare diseases through activities such as door-to-door publicity of rare diseases, health lectures, genetic testing, diagnosis and treatment of rare diseases. It is significant in reducing the heritability,incidence rate, misdiagnosis rate and fatality rate of rare diseases,increasing the society’s understanding of rare diseases and helping solve actual difficulties for families with rare-disease patients.
Fundamentally speaking, to reduce and stop the occurrence of rare diseases,it is of more importance to improve and perfect the disease screening system and do well in the antenatal diagnosis to root out the inter-generation heredity of rare diseases. While focusing on technical innovation and promoting industrial development, Basecare has also been actively devoted to public welfare undertakings, with an aim to truly benefit the patients with genetictest technologies and to contribute to the perfection of the comprehensive security system for rare diseases and the implementation of the “Health China”strategy.