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Hainan hospitals join national rare disease treatment network

ehainan.gov.cn | Updated: 2019-02-21

A total of seven Hainan hospitals have become part of a collaborative network recently set up by the National Health Commission for the diagnosis and treatment of rare diseases.

Hainan General Hospital is responsible for developing the cooperative working system and working standards. Critical patients with rare diseases will be sent to receive quality treatment in member hospitals within the network. Member hospitals in Hainan, including Maternal and Child Health of Hainan Province and the Haikou People's Hospital, are usually in charge of diagnosing rare diseases and long-term patient management.

By the end of this March, hospitals across the country plan to draft solutions for the hospital network to encourage patients with rare diseases to sign up for a family doctor and offer a set of tracking services for the entire process.

Rare diseases are also sometimes known as "orphan diseases". They are rare but can present a fatal threat to people's lives in serious cases. Hainan plans to explore ways to prevent and treat these diseases. A rare disease union was founded in Haikou on Dec 19, 2018 when a meeting of national experts was held to examine medical skills needed for rare diseases and genetic metabolic diseases.

In recent years, medical academies for rare diseases have been emerging in cities like Beijing, Shanghai, and Guangzhou. Hainan intends to stay up to date by seeking to understand and explore rare diseases and developing better treatments for children in Hainan.

A total of one leading State-level hospital, 32 leading provincial-level hospitals, and 291 member hospitals were selected as members of the network.