People suffering rare diseases need help

Nearly 10 million patients suffering from rare diseases in China are facing difficulties receiving proper diagnosis and treatment, medical experts and charity groups said at the second China Rare Disease Summit on the sixth World Rare Disease Day on Thursday.

Medicine shortages, limited knowledge of rare diseases and a lack of a comprehensive national medical insurance program are the main reasons for incorrect diagnosis and treatment, experts and relatives of some patients said at the Summit held in Beijing.

According to the World Health Organization, a rare disease is one that affects a small percentage of the population, ranging from 0.65 in 1,000 to 1 in 1,000. Most of them are caused by genetic disorders and are difficult to cure.

The summit discussed many difficulties the patients and their family members face and the methods they use to solve them.

"Many treatments for rare diseases are not included in the national medical insurance, and some treatments can cost as much as 200,000 yuan ($32,140) a month," Li Dingguo, director of the rare disease branch of the Shanghai Medical Association, said at the summit, adding that some patients have to go without treatment because they can't afford it.

"The hospitals which are able to diagnose and give treatment for rare diseases should offer help to the other hospitals, especially those in less developed areas in China." Ding Jie, vice director of the Peking University First Hospital, said.

Some medicine companies and relatives of patients told the Global Time at the summit that most drugs are imported from foreign countries and usually take a long time to receive approval before they reach the Chinese market. The sale of some effective drugs, they say, is banned on the Chinese mainland.

Also at the meeting, the first national organization for the study of rare diseases was launched in Jinan, Shandong Province, by seventeen medical institutions, Han Jinxiang, Party secretary of the Shandong Academy of Medical Sciences, announced.