February 28, 2022 is the fifteenth “International Rare Disease Day”, and this year’s theme is “Tomorrow is better because of rareness”. In order to send more care to families with rare diseases and help the development of the national rare disease diagnosis and treatment guarantee, on the morning of February 28, Wuzhou Workers Hospital held the theme of “International Rare Disease Day” free clinic and popular science at the same time in the department and Beishan District. Publicity activities, free registration fees for the general public who come to see a doctor, face-to-face explanations and exchanges, distribution of health education popular science books, improve people’s awareness of rare diseases, and let everyone know more about and care for rare disease patients.
In order to strengthen the management of rare diseases in my country, in 2019, the National Health and Health Commission announced the establishment of the National Rare Disease Diagnosis and Treatment Collaboration Network. The hospitals work together to strengthen rare disease management, improve the level of rare disease diagnosis and treatment, and provide standardized and scientific diagnosis and treatment services for rare disease patients in Wuzhou.
Since 2019, the hospital has provided diagnosis and treatment for 651 rare disease patients, of which 611 patients have improved after discharge, and the patient improvement rate is 93.86%; the departments of patients are mainly concentrated in neurology , Rheumatology and Immunology, Ophthalmology, Endocrinology, Hematology and other departments; in the age distribution of patients, 25.50% are under 44 years old, 33.03% are 45-59 years old, 31.49% are 60-74 years old, and 9.98% are over 75 years old . Through nearly 3 years of practice, the hospital has accumulated rich experience in the diagnosis and treatment of rare diseases. In the future, the hospital will continue to make efforts in the prevention, publicity, diagnosis and treatment of rare diseases Health rights of patients with rare diseases.