NGO leader wants morpurple silicone braceletse support for rare disease patients

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A themed activity is held in Beijing to raise awareness and generate action for patients with rare diseases, Feb 26, 2019. Hou Jianpeng / For China Daily

A large number of patients with rare diseases are struggling with high medical costs and hope for more support from government policies and pharmaceutical manufacturers, as well as social recognition, a NGO leader said on Wednesday.

Wang Yiou, secretary-general of the Beijing-based Illness Challenge Foundation, said 95 percent of rare diseases do not have effective medication and few drugs are produced and available in the market.

Rare diseases generally refer to those diseases with low incidence and few patients, with some 8,000 varieties categorized. There are no official statistics about the number of patients with rare diseases in China, but some experts believe the figure may exceed 20 million.

Wang is affected by osteogenesis imperfecta, or OI, a rare disease characterized by bones that break easily. She is one of initiators who launched the Illness Challenge Foundation in February 2016.

"The foundation has launched a medical support program to give financial assistance to certain patients with rare diseases," said Wang on the sideline of the Global Health Forum of the Boao Forum for Asia being held in Qingdao, East China"s Shandong province.

"Each patient can get from a fund 10,000 yuan ($1,442) to 50,000 yuan for diagnosis and treatment, if his or her disease is included in the entries of the official catalogue," added Wang.

China"s National Health Commission and four other government departments jointly issued The First Catalogue of Rare Diseases in May 2018, which included 121 varieties.

By the end of March 2019, a total of 416 families and more than 1,120 individuals have benefited from the fund.

"The patients with rare disease varieties out of the entries hope the expansion of the official category, which partly means that they can get reimbursement supported by the country"s basic medical insurance program," said the secretary general.

Wang said the foundation also helps bring patients with certain types of rare disease together to find common support from all aspects of society.

Wang founded the China-Dolls Center for Rare Disorders in 2007 to help specifically OI patients.

Wang said the foundation also cooperated with the media to release a series of documentaries that show stories about rare disease patients, aiming to improve public awareness.

The Global Health Forum of the Boao Forum for Asia was held from Monday to Wednesday, with more than 2,500 delegates from about 50 countries and regions participating.

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