China Youth Daily Client News (China Youth Daily, China Youth Daily reporter Zhang Manyu) On the occasion of the 15th International Rare Disease Day, the video of the National Rare Disease Diagnosis and Treatment Network Office hosted by the National Rare Disease Diagnosis and Treatment Network Office A work meeting is held. This conference has an offline main venue in Peking Union Medical College Hospital, and representatives of provincial (autonomous regions and municipalities) health committees (bureaus), leading hospitals and member hospitals will participate online.
at the meeting The National Rare Disease Diagnosis and Treatment Cooperation Network Office, China Rare Disease Alliance, Peking Union Medical College Hospital, West China Hospital of Sichuan University, Xiangya Hospital of Central South University, People’s Hospital of Tibet Autonomous Region, and Beijing Pain Challenge Public Welfare Foundation organized the “15th International Rare Diseases”. day series”. More than 100 rare disease diagnosis and treatment discipline leaders and business backbones, hospital managers at all levels and various types, medical workers from member units of the National Rare Disease Diagnosis and Treatment Collaboration Network, and medical government and medical management experts conducted academic exchanges.
Cheng Nansheng, Deputy Secretary of the Party Committee and Secretary of the Disciplinary Committee of West China Hospital of Sichuan University, said, To carry out international cooperation in rare disease clinical diagnosis and treatment, clinical and basic research, talent training, etc., and to strengthen collaboration and innovation in the field of rare diseases, is the implementation and practice of my country’s policies. We must unswervingly implement high-level opening up, adhere to the implementation of wider, wider fields and deeper level of open cooperation, and open up a new situation of win-win cooperation, so that more rare disease patients can share international cooperation. the benefits brought.
Zhang Guojun, Secretary of the Party Committee of the Beijing Children’s Hospital Affiliated to Capital Medical University and Director of the Rare Disease Center of the National Children’s Medical Center (Beijing), analyzed the current status of the diagnosis and treatment of rare diseases in the world, and introduced the establishment of the early diagnosis and treatment system for rare diseases , interprets the practice of the new model of regional cooperation. He proposed that in the future, continuous efforts should be made to gradually improve the system construction in terms of policy, medical teaching, professional ability, technical system, knowledge base sharing, and popularization of popular science, so as to benefit the majority of children and their families.
In the remote multidisciplinary consultation focusing on rare diseases of the nervous system, the neurology, orthopedics, More than 50 experts from the Department of Stomatology, Anesthesiology, Rehabilitation, Pediatrics, Spine Surgery, and Ophthalmology conducted consultations and discussions on Spinal Muscular Atrophy (SMA) and a case of Neuromyelitis Optica Spectrum Disorder (NMOSD) from Tibet.
Zhao Yuhua, chief physician of the Department of Neurology, Tibet Autonomous Region People’s Hospital, who raised the consultation request, said: “This consultation has improved the rare disease diagnosis and treatment capabilities of the Tibet Autonomous Region People’s Hospital, and also made us discover many of our own shortcomings. For example, the management of complications, laboratory technology and imaging technology need to be improved urgently. I believe that with the support of the collaborative network, we will achieve overall improvement in multidisciplinary diagnosis and treatment.” Li Linkang said that the realization of the cooperation between Peking Union Medical College Hospital and the People’s Hospital of Tibet Autonomous Region will be realized. Remote consultation for rare diseases has positive significance for improving the diagnosis and treatment capabilities of rare diseases in the western region.
Jiao Yahui, director of the National Health Commission’s Medical Administration and Hospital Administration and deputy director of the National Rare Disease Diagnosis and Treatment Network Office, affirmed the achievements made by the collaborative network member units in the diagnosis and treatment of rare diseases in her speech. Requirements are put forward to carry out remote consultation between hospitals in the collaborative network, promote multidisciplinary consultation in hospitals, improve the quality of direct reporting of rare diseases, and improve diagnosis and treatment capabilities. Zhang Wenbao, director of the Medical Management Division of the Medical Administration and Hospital Administration Bureau of the National Health Commission, reported the registration of the rare disease direct reporting system. Zhang Shuyang, President of Peking Union Medical College Hospital, Deputy Director of the National Rare Disease Diagnosis and Treatment Collaboration Network Office, Xu Min, Director of the Medical Administration and Medical Administration Division of the Shandong Provincial Health Commission, and Li Shizhong, a second-level researcher of the Medical Administration and Medical Administration Division of the Hunan Provincial Health Commission, represented the country respectively. The leading hospitals and local health and health commissions reported on the management of rare diseases. The meeting was chaired by Li Linkang, deputy director of the Office of the National Rare Disease Diagnosis and Treatment Collaboration Network and executive director of the China Rare Disease Alliance.
It is understood that this event is centered on rare disease patients, focusing on improving the diagnosis and treatment capabilities of rare diseases at the grass-roots level. Through the combination of online and offline, clinical cases are used for remote consultation, practical teaching and experience sharing. , is a practice to explore the hierarchical diagnosis and treatment of rare diseases, which will help to improve the diagnosis and treatment of rare diseases at the grassroots level in my country and contribute to the construction of a healthy China.
Source: China Youth Daily Client