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Legislation, insurance urged for rare diseases

SHANGHAI Medical Association today set up a rare disease diagnosis and treatment department to promote related legislation, research and insurance coverage.

Rare diseases are diseases that affect a small percentage of the population. In China, the incidence is 0.01 percent.

There are about 5,000 to 6,000 rare diseases, or 10 percent of all human diseases, experts said today, the World Rare Disease Day.

Most rare diseases are genetic and half of rare diseases appear early in life with many children showing symptoms upon delivery or within 12 months.

"It is urgent to set up a system to introduce best medicines and cover the medical bills of rare disease patients so they can afford good medicines and have a good quality of life," said Dr Li Dingguo, director of the rare disease department. "All medicines treating rare diseases are expensive."

According to the experts, the local government has made a plan to establish a foundation to cover the hospital expenses of 12 preventable and treatable rare diseases for local patients.

Genetic tests will also be conducted on couples and on fetus to provide early intervention and treatment to prevent children born with rare diseases.


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