Rare Disease in China

In Market Access by Freya Smale

The diagnosis of rare diseases and the availability of drugs to treat them remain significant challenges to the healthcare system in China. Although several strategies have been employed to promote the identification and treatment of rare diseases, they remain under-recognized in this region. Patient advocacy groups, other non-profit organizations, academic institutions and pharmaceutical companies have recently made significant efforts towards increasing the awareness and understanding of rare diseases. Nevertheless, China is still in the early stages of enacting policies related to rare diseases and regulation of muchneeded orphan drugs. Unlike in the US, EU, Japan and Taiwan, there is currently no specific nationwide legislation for orphan drugs in China. Furthermore, Chinese public health insurance does not cover the medical requirements of most rare disease patients.

The recent launch of the first pilot project designed to improve the level of healthcare for rare disease patients in China is an important development. The Chinese Organization for Rare Disorders (CORD) believes it is critical that increased awareness and improved knowledge of rare diseases in China is accompanied by the establishment of appropriate patient registries/networks and reimbursement policies for their treatment. Other key steps would include the implementation of policies relating to fast-track approval, exemptions from large-scale clinical trials, and special approval of orphan drugs in China. Progress on these important issues would place China in a strong position to address the healthcare and societal burdens associated with rare diseases.

Download the whitepaper now to find out more about:

  • Legislation relating to rare diseases
  • Laws and regulations relating to rare diseases worldwide
  • Social support and advocacy to increase rare disease awareness
  • Research support in rare diseases
  • Myasthenia Gravis (MG) in China
  • Economic incentives for orphan drug access
  • Pilot project to improve healthcare in rare diseases
  • Challenges of rare diseases and their treatment

…and much more!

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