A Working Commission on Rare Diseases set up on World Rare Disease Day

中国社会福利基金会罕见病工作委员会成立

Source: 凤凰公益

The China Social Welfare Foundation (CSWF, 中国社会福利基金会) and the China Dolls Center for Rare Disorders(北京瓷娃娃罕见病关爱中心) jointly launched a press conference to mark the occasion of the World Rare Disease Day 2016 and the opening ceremony of the Year of Spreading Philanthropy (公益传播年) on February 29th. The CSWF announced a funding of 1 million yuan for the setting up of a Working Commission on Rare Diseases, for the sake of the development of care for rare diseases in China. The Commission will serve as the supporting body for the CSWF in the field of rare diseases by providing research, giving policy advice and promoting international communication and cooperation.

The CSWF has been focusing on the field of rare diseases since it financed the establishment of the China Dolls Center in 2009, says its vice chairman Xiao. According to recent reports, there are less than 60 philanthropic institutions in China that pay attention to rare diseases, and the number of those who could provide help to patients in the long term is less than 20. Considering this the CSWF hopes, through the establishment of the Commission and the promotion of the World Rare Disease Day, to enhance public understanding and promote related research in the field of rare diseases, as it also seeks to improve the policies for the sufferers of such diseases.

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Translated by Cao Yuqian

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