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Peking Union Medical College Hospital, together with the society, composes a new chapter in the diagnosis and treatment of rare diseases
CopyFrom: PUMCH UpdateTime: 2020-12-11 Hits: 233 Font Size: SmallBig

From October 24 to 25, 2020, the 2020 China Rare Disease Conference was held in Beijing. The conference was organized by the National Health Commission and the National Food and Drug Administration and the China Rare Diseases Alliance, and jointly undertaken by PUMCH, China Hospital Association, China Medical Innovation Promotion Association, Rare Disease Branch of China Research Hospital Association, and Beijing Rare Disease Diagnosis and Protection Association. The conference has an opening ceremony, a main forum, nine sub-forums, and ten satellite conferences. A number of experts gave keynote reports on the research and diagnosis and treatment of rare diseases. More than 700 hundred people participated, including scholars from the administrative departments, domestic and overseas scientific research institutes, medical associations, medical institutions and universities as well as rare disease patients. Nearly 10,000 people participated in the “cloud meeting” through the live broadcast of the conference.

Group photo of leaders and guests at the China Rare Disease Conference.

Academician Zhao Yupei, the president of PUMCH and chairman of the China Rare Disease Alliance, said that since its establishment, the China Rare Disease Alliance has been gathering research talents, integrating academic advantages, strengthening collaborative innovation, and connecting the society to promote the development of rare diseases in our country. In terms of rare disease diagnosis and treatment, promoting multidisciplinary diagnosis and treatment of rare diseases, carrying out rare disease diagnosis and treatment training, carry out rare disease registration and promote direct reporting. In terms of the availability of drugs and medical security, conducting theoretical and policy research and exploring rare disease drugs and medical security programs with Chinese characteristics.

Ma Xiaowei, director of the National Health Commission, particularly emphasized that the causes of rare diseases are complex, and research on the etiology and drugs of rare diseases is an important opportunity to promote the combination of basic medical science and clinical research in our country to achieve scientific breakthroughs. The importance of combining basic and clinical practice has been well confirmed and embodied in the fight against the COVID-19 pandemic. Future work on rare diseases should pay more attention to the role of basic research and the combination of basic and clinical.

Wang Jiangping, Vice Minister of the Ministry of Industry and Information Technology pointed out that the Ministry of Industry and Information Technology has guided enterprises to develop drugs for rare diseases through policies, by including rare disease drugs into the categories of shortage drugs for management and listed as key monitoring and supply targets. In the next step, the Ministry of Industry and Information Technology will do more to mobilize the enthusiasm of scientific research institutions and manufacturers to develop drugs for rare diseases, encourage multi-party cooperation, and study and formulate incentive policies for rare diseases drugs.

Chen Shifei, deputy director of the State Drug Administration, pointed out that by optimizing the approval and review procedures, the State Drug Administration has accelerated the launch of rare disease drugs, established a communication and discussion mechanism for the connection between drug R&D and technical review, and introduced the acceptance of drugs overseas technical guidelines for clinical adaptation data.

“We have been running on the way of rare diseases diagnosis and treatment.” Professor Zhang Shuyang, Secretary of the Party Committee of PUMCH and vice chairman and secretary-general of the China Rare Disease Alliance, introduced China's rare disease diagnosis and treatment system and scientific research progress in the report. Recently, the Ministry of Science and Technology of the People's Republic of China approved the “National Key Laboratory of Difficult and Severe Diseases and Rare Diseases” to land in PUMCH. The construction and operation management of the National Key Laboratory will further strengthen the scientific research on difficult, severe and rare diseases.