With the approaching of the Rare Disease Day in 2019, China saw the official release of its first Rare Disease Guidelines (2019 Version). It was supported by the National Health Commission and the compilation was led by Rare Disease Treatment and Steering Experts Committee (PUMCH). On the afternoon of February 27, the release ceremony was held at the Lecture Hall of PUMCH, which was hosted by the Bureau of Medical Administration of the Commission and organized by China Alliance for Rare Diseases and PUMCH.
The Guidelines was written by nearly a hundred experts across China and reviewed by nearly 80 authority figures. It has Zhao Yupei as its honorary editor-in-chief, who is director of the Alliance and president of PUMCH. In 700,000 characters and based on Contents and Explanations, the Guidelines gave detailed information of 121 rare diseases: their definition, cause, epidemic and clinical indications, auxiliary examination, diagnosis, differential diagnosis, and graphic procedures of treatment. It will serve as a standard and practical guide to the diagnosis and treatment of rare diseases.
Present at the release ceremony were: Academician Zhao Yupei, PUMCH president, Zhang Zongjiu, director of Bureau of Medical Administration of the Commission, Zhang Feng, deputy director of Department of Drug Policy and Essential Medicine of the Commission, Li Dachuan, director of Office of Medical Institutions Management of the Commission, Du Xian, president of the People's Medical Publishing House, and Zhang Shuyang, office director of Rare Disease Treatment and Steering Experts Committee and vice president of PUMCH. The ceremony was chaired by Li Linkang, executive director of the Alliance.
Rare diseases are not really rare in China, said Zhang Shuyang, and the key lies in diagnosis and treatment. The Guidelines will play a key role in boosting and standardizing such treatment. The Alliance will pool all resources and actively work towards its goal.
Zhang also talked about the second general meeting of NGO Committee for Rare Diseases she just attended in New York. At the meeting she shared China's rare disease policy and strategy with a hundred representatives from the United Nations, international NGOs, governments and academic institutions. The representatives said that the Chinese government, research teams and social organizations have been making tremendous efforts on rare disease, and its plan and experience is a great reference to the world.
The Guidelines will be published by the People's Medical Publishing House. It will be in both paper and digital versions. It will be made into medical assistant APPs to display rare disease knowledge in a multi-layered way and better help primary care doctors.
Leaders and guests attending the release ceremony
Release ceremony of the Guidelines