China's rare disease prevention League was established in Ji'nan, Shandong province.
Xinhua Wang Haiying
28 is an international rare disease day. The first Chinese rare disease national organization, China's rare disease prevention and Control League, was founded in Ji'nan, Shandong, by 17 medical units in 13 provinces. China's first national scientific research project on rare disease prevention and treatment, "rare disease prevention research and demonstration in China", was launched at the same time.
in our country, the disease with the incidence of less than 1/10000 and the disease rate less than 50 1/10000 is defined as rare disease, and there are 5781 rare diseases identified at present. Because of the discovery of rare diseases and the low level of diagnosis, many patients were misdiagnosed and missed, which resulted in the late treatment and irreversible changes of the disease.
China rare disease prevention and control alliance will work to build a rare disease control platform and network, build a number of rare disease diagnosis and treatment centers, grasp the rare disease epidemiology in China, focus on scientific and technological breakthrough, the scientific popularization and health education of rare diseases, and improve the prevention and treatment of rare diseases in China.
Han Jinxiang, the party secretary of the Shandong Academy of Medical Sciences, one of the sponsors of the rare disease prevention alliance in China, said that the rare diseases are scattered, with many diseases, and distributed in the various disciplines of the hospital. Because of the lack of registration and reporting mechanism, it is difficult to obtain reliable data of clinical outcome and medical status of rare diseases, which have brought difficulties to epidemiological research and health policy formulation. Expert analysis and the establishment of a rare disease prevention alliance will help the collection and statistics of rare diseases, carry out epidemiological studies, master the spectrum of disease and improve the level of diagnosis and treatment.