From December 18 to 19, 2021, China Rare Disease Conference 2021 was held in Beijing, for which Chen Zhu, Vice Chairman of the Standing Committee of the National People’s Congress and President of the Red Cross Society of China, sent a congratulatory letter. Wu Peixin, Vice President of PUMCH, attended and delivered a speech at the opening ceremony. The conference was chaired by Li Linkang, Executive Director of the China Alliance for Rare Diseases.

In his congratulatory letter, Vice Chairman Chen Zhu pointed out that rare diseases have attracted increasing attention from the whole society in China, and that the prevention and treatment of rare diseases is of great significance to improving the health of all Chinese people and building a healthy China. The national departments of health, science and technology, drug administration, and medical insurance in China have joined hands to conduct research on efficient policies and systems. By formulating a rare disease catalogue, establishing a national cooperative network for the diagnosis and treatment of rare diseases, and strengthening regional cooperation and remote support, those departments work together to explore the “Chinese model” for the prevention and treatment of rare diseases, which marks a new stage for China in this area.

As Vice President Wu Peixin said in his speech, with the support of the National Health Commission and other departments and the China Alliance for Rare Diseases, PUMCH, as the leader of China’s national collaborative network of hospitals for rare disease diagnosis and treatment, has made every effort and commitment to advance the diagnosis and treatment of rare diseases. In the future, PUMCH, with the aid of the China Alliance for Rare Diseases, will continue to promote cooperation among hospitals in the collaborative network. Meanwhile, it will bring its academic resources into full play in building up a communication platform for all relevant parties so that patients with rare diseases can enjoy higher-quality medical services, making more contribution to the healthy China initiative.

The opening ceremony not only witnessed the launch of China’s first national-level academic journal on rare diseases, Rare Diseases Research, but also served as the launching ceremony of the national project on improving capability for the diagnosis and treatment of rare diseases supported by the Central Special Lottery Public Welfare Fund and the launch ceremony of the Chinese Red Cross Foundation Rare Disease Mutual Assistance Fund.

During the conference, Zhang Xue, Academician of the Chinese Academy of Engineering and President of Harbin Medical University, Chen Kaixian, Academician of the Chinese Academy of Sciences, and Zhang Shuyang, President of PUMCH and Vice Chairman of the China Alliance for Rare Diseases respectively delivered their reports themed “Arsenic for the Treatment of Acute Promyelocytic Leukemia”, “Latest Advances in Biomedicine and Thoughts on its Development in China” and “Progress in China’s Rare Disease Collaborative Innovation Mechanism and Direction for Future Studies”.

The launching ceremony for the national project on improving capability for the diagnosis and treatment of rare diseases supported by the Central Special Lottery Public Welfare Fund

Text: The China Alliance for Rare Diseases and the Publicity Department

Photo: The China Alliance for Rare Diseases

Translator: Liu Haiyan

Editor: Wang Yao