Embracing the Change: Accessing Rare Disease Patients in China

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Chinese rare diseases environments are dynamic and rapidly changing, and a number of new access and affordability options are emerging for innovative therapies. To win in the market, it takes a patient-first mindset, creative approaches, and an actionable strategy tailored to the characteristics of innovative therapies and the unmet needs of Chinese patients.  

Official estimates put the Chinese rare disease population at 20 million, and that is likely an underestimate. One reason is that it is difficult to identify and diagnose rare disease patients in China. Another is that the very definition of rare diseases in China has not been clear cut to date. Orphanet, one of the rare disease databases, recognizes over 6,000 rare diseases; of which only 121 made it to China’s official rare disease catalogue released in 2018. 

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