Intractable Rare Dis Res. 2021;10(3):148-153. (DOI: 10.5582/irdr.2021.01027)

An update on China's national policies regarding rare diseases

Ying ZY, Gong L, Li CY

Over the past few years, China has paid greater attention to the topic of rare diseases. The Chinese Government has made considerable efforts to gradually improve the situation of patients with rare diseases in terms of diagnosis and treatment, access to medication, and affordability of care. The National Health Commission implemented a raft of measures, including the first Catalog of Rare Diseases, establishment of a rare diseases alliance, establishment of the Network for Collaboration in Rare Disease Diagnosis and Treatment, formulation of the Guidelines for the Diagnosis and Treatment of Rare Diseases, sharing of diagnostic and treatment information, and creation of expert committees, to ensure the standardization of rare disease diagnosis and treatment and to promote the improvement of rare disease diagnosis and treatment capabilities nationwide. In order to encourage the research, development, and production of drugs to treat rare diseases, the National Medical Products Administration has drafted a series of policies to accelerate the review and approval of drug registration and to support the research and development of drugs to treat rare diseases. The Ministry of Finance has also helped to implement tax incentives for drugs to treat rare diseases, to encourage the marketing and importation of drugs to treat rare diseases, and to reduce the cost of drugs for patients with rare diseases. Through adjustment of the List of Drugs Covered by National Medical Insurance, the National Healthcare Security Administration has covered an increasing number of drugs to treat rare diseases under basic medical insurance. It has also negotiated to reduce the price of some drugs to treat rare diseases, further reducing the economic burden on patients with rare diseases.

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