On the afternoon of February 19, 2023, the inauguration of the Chinese Society of Rare Diseases, the Chinese Medical Association (CMA) was held in Beijing. Fifty-six members of the first committee of the society attended the grand event, including CMA President Zhao Yupei, Vice President Li Wusi, Vice President and Secretary General Wang Jian, Inspection Commissioner Ma Qun, deputy head of the preparatory group/ CMA Vice President Feng Guosheng, deputy head of the preparatory group/ CMA Vice Secretary General Guo Weihua, Professor Zhang Shuyang who is head of the preparatory group and initiator of the society, and Professor Ding Jie. In the meeting, the standing committee members, vice chairpersons and chairperson of the first committee were elected. Zhu Shuyang, President of PUMCH and professor of the Department of Cardiology, was elected as chairperson of the first committee.

Vice President Feng Guosheng briefed the audience about the preparation process of the Chinese Society of Rare Diseases and the basic information of the 69 members of the first committee. Then the election of standing members, vice chairpersons and chairperson was held. Zhang Shuyang was unanimously elected as the chairperson of the first committee, Liu Li, Yuan Yun, Huang Guoying and Han Jinxiang were elected as vice chairpersons, Ding Jie as honorary chairperson, and Chen Limeng and Tian Zhuang from PUMCH were elected as a standing committee member and a member of the committee respectively.

In her speech, the newly elected chairperson Zhang Shuyang pointed out that the establishment of the Chinese Society of Rare Diseases, CMA was another milestone event in the field of rare diseases in China. Upon its establishment, the society will waste no time in proceeding with the following tasks: organizing professional training on rare diseases, strengthening academic exchanges in the field, and continuously cultivating more physicians who can diagnose and treat rare diseases; organizing expert teams to compile guidelines and optimize clinical pathways to improve the standardized diagnosis and treatment of rare diseases; carrying out registry-based studies on rare diseases, pooling rare disease cases and relevant resources, conducting academic research and promoting scientific and technological innovation and translation of the research outcomes.

On behalf of CMA, Vice President Li Wusi put forward three expectations for the Chinese Society of Rare Diseases: first, adhere to and strengthen the leadership of the Party in a way that serves the vast community of science and technology, and speedily establish a Party working group; second, prioritize academic pursuits and carry out academic exchanges with the sight set on both basic and cutting-edge areas, secure key breakthroughs with original and pioneering efforts around major issues of various disciplines, and enhance engagements and partnership with institutions like the China Alliance for Rare Diseases; third, foster scientific ethics and academic integrity and nurture a favorable and positive atmosphere for research.  

▲ President Zhao Yupei presented the appointment letters to the honorary chairperson, chairperson and vice chairpersons.

▲ CMA Vice President Li Wusi, Vice President Feng Guosheng, Vice President/Secretary General Wang Jian and Vice Secretary General Guo Weihua awarded appointment letters to the newly elected standing committee members.

Written by Chen Mingyan

Photographed by Sun Liang

Translated by Liu Haiyan

Edited by Xiao Xiong and Wang Yao