China is still in the early stages of making policy on rare diseases.

"Diagnosis and availability of drugs remain significant challenges," said Zhang Xue, a member of the committee for rare disease treatment and support with the National Health and Family Planning Commission.

Some progress in licensing drugs and increasing reimbursement has been made and the first national list of rare diseases will be published this year.

According to the Medical Insurance Directory, China currently has 119 new drugs at various stages of licensing and registration, of which 49 are covered by national medical insurance.

"The support program will bridge the gaps between individual patients, medical resources and insurance. We hope misdiagnosis and delayed diagnosis will become less frequent. Patients and their families deserve a good living and should know they are supported," said Wang.

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