The reporter learned from the 2024 China Rare Disease Conference, which opened on the 19th, that as of now, the total number of hospitals in the national rare disease diagnosis and treatment cooperation network has reached 419, significantly improving the management and diagnosis and treatment level of rare diseases; As of August this year, 37 rare disease drugs have been approved for market this year, among which several overseas new drugs or indications have achieved global first approval in China; In the first month of the implementation of the latest version of the national medical insurance drug catalog this year, during the negotiation and admission agreement period, more than 220000 patients benefited from the use of drugs for 37 rare diseases. "China has a large population base, and although the proportion of patients with various rare diseases is small, the absolute number has reached more than 20 million." Yu Yanhong, member of the Party Group of the National Health Commission and Director of the State Administration of Traditional Chinese Medicine, introduced at the meeting that the National Health Commission has promoted the continuous improvement of rare disease prevention and control capabilities and accelerated the exploration of the Chinese model for rare disease diagnosis, treatment, and protection through the development of a rare disease catalog, the establishment of a national rare disease diagnosis and treatment cooperation network, and the establishment of the China Rare Disease Alliance. Li Tao, Deputy Director of the National Healthcare Security Administration, introduced that the National Healthcare Security Administration has improved the admission procedures, promoted admission negotiations, optimized the supply guarantee mechanism, and effectively improved the medical security level for rare disease patients. Only in 2023, the medical insurance catalog will add 15 drugs for rare diseases, filling the gap in drugs for 10 diseases; On average, medical insurance reduces the burden of rare disease patients by about 5500 yuan per person. At the same time, we will improve the "dual channel" management mechanism for negotiating drugs, establish a medical insurance drug cloud platform, integrate drug production, circulation, use and other links, and solve the problem of poor drug purchase information for rare disease patients. Zhang Shuyang, President of Peking Union Medical College Hospital and Vice Chairman of the China Rare Disease Alliance, introduced that currently, the accessibility of therapeutic drugs in the first and second batches of the national rare disease catalog exceeds 60%, breakthroughs have been made in research and innovation, the professional talent team continues to grow, and the level of diagnosis and treatment research has rapidly improved. The average diagnosis time for rare disease patients who come to Peking Union Medical College Hospital for treatment has been shortened from 4 years to within 4 weeks of arrival, and medical expenses have been reduced by 90%. Through the joint efforts of all sectors of society, the awareness rate of rare diseases has increased from 31% in the past to 69%. (New Society)
Edit：He ChengXi Responsible editor：Tang WanQi
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