In order to promote the development of prevention and treatment of Rare disease, strengthen the ability of grass-roots units to identify, diagnose and treat Rare disease, make early diagnosis and early intervention, and benefit more patients with hereditary Angioedema (HAE), the China Emergency Department HAE Continuing Education and Screening Project launched by the China Health Promotion Foundation was officially launched at the 8th Asia Pacific International Emergency Forum held on July 15, 2023. Chairman of the Emergency Medicine Branch of the Chinese Medical Association, initiator of the project Professor Lv Chuanzhu, Professor Zhao Xiaodong of the Fourth Medical Center of the PLA General Hospital, Professor Liang Xianquan of the Emergency Medicine Branch of the Guizhou Medical Association, Professor Zhang Xinchao of the Beijing Hospital, Professor Yu Xuezhong of the Peking Union Medical College Hospital, Professor Zhang Guoqiang of the China-Japan Friendship Hospital, Professor Han Xiaotong of the Hunan Provincial People's Hospital, Professor Cao Yu of the West China Hospital of Sichuan University Li Yakun, Marketing Director of Takeda Rare disease Business Department, Cai Xia, teacher of Science and Technology Literature Publishing House and others attended the launching ceremony. The Chinese emergency department HAE continuing education and screening project plans to complete the science popularization and education of 80000 Emergency physician in the country in the next year. Through the establishment of a national HAE expert group, the emergency diagnosis and treatment path will be developed, and the concept of disease diagnosis and treatment will be rapidly sunk through in-depth training at the grass-roots level, so as to improve the clinical ability to early identify and quickly diagnose HAE and promote the progress of China's HAE disease field. Hereditary Angioedema is a rare genetic disease, which is characterized by recurrent and unpredictable local subcutaneous or mucosal edema, among which laryngeal edema is the most dangerous. If the rescue is not timely, the patient will die of asphyxia in an average of 4.6 hours, and the mortality rate is as high as 40%. In the emergency department, whether it is receiving 120 visits before admission or emergency room rescue after admission, laryngeal edema is the highest level and top priority of emergency treatment, and the rescue time is calculated in minutes and seconds. The most difficult task in rescuing HAE patients is to recognize this disease. According to the estimated prevalence rate abroad, there are approximately 30000 patients in China, but currently there are less than 1000 diagnosed patients in China. In clinic, the symptoms of HAE often overlap or confuse with allergy, Appendicitis, acute Epiglottitis and other diseases, so it is often misdiagnosed or ignored. Data shows that the average delayed diagnosis of HAE in China is 13 years, and one-third of undiagnosed patients die from laryngeal edema. For HAE patients, these 13 years are like sitting on a time bomb, knowing when it will explode.
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