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Database Being Established for Rare Disease Sufferers in Shanghai

Estimated 173,000 people are living with rare diseases in Shanghai.

The city has started to set up a database for people with rare diseases in an effort to boost medical care, policy making, drug introduction and research and insurance coverage for this group of people.

There are over 7,000 known rare diseases in the world, with 250 to 280 new types detected annually. An estimated 173,000 people are living with rare diseases in Shanghai, while there are about 20 million across the nation.

Rare diseases are usually related with different systems and organs, causing chronic and progressive damage and resulting in lifelong suffering, disability and even death. About half of patients start to develop symptoms upon delivery or in childhood, and 30 percent die before age three.

These patients need long-term or even lifelong treatment, but only six percent have medication and just one percent can be cured. Many medicines are very expensive and are not covered by local medical insurance.

To help people with rare diseases, Shanghai established the Shanghai Rare Disease Prevention and Control Foundation in 2014 to expand care and support.

So far, the foundation has established a list of rare diseases, published books on rare diseases, and boosted legislation for treatment and sponsorship. “Our goal is that all people with rare diseases can enjoy affordable medicine,” said Dr. Li Dingguo, a medical expert involved in rare disease treatment. [APBN]

Source: Shanghai City Government