February 28 is the 15th International Rare Disease Day. On February 26, the Hunan Rare Disease Diagnosis and Treatment Collaboration Network Work Promotion Conference and International Rare Disease Day series activities were held in Changsha. At the meeting, the online platform of the Hunan Rare Disease Diagnosis and Treatment Network was launched, and the first MDT (Multidisciplinary Diagnosis and Treatment Model) expert team of the Hunan Rare Disease Diagnosis and Treatment Network was appointed.
Huang Gengwen, director of the Medical Department of Xiangya Hospital, said that although the incidence of rare diseases is low, the patient population is still large due to the wide variety of diseases. According to incomplete statistics, there are more than 1.2 million rare disease patients in Hunan Province. In recent years, with the increasing attention paid to rare diseases by the Party and government departments, medical institutions, charitable departments, non-governmental organizations, and enterprises, the medical conditions of patients, drug research and development, medical security, and charity assistance have been greatly developed. and progress. Measures such as drug research and development, negotiation mechanism, and inclusion in the medical insurance list for rare diseases have brought light and hope to patients with rare diseases.
Since the launch of the Hunan Provincial Rare Disease Diagnosis and Treatment Collaboration Network on April 29, 2021, Hunan Province has been committed to promoting the standardized and orderly development of rare disease diagnosis and treatment, and enhancing the awareness and diagnosis and treatment of rare diseases in various medical institutions , management level, provide early diagnosis, early treatment and convenient diagnosis and treatment channels for rare disease patients, reduce the medical burden, and safeguard the health rights and interests of rare disease patients.
Central South University Xiangya Hospital pioneered the whole-course management service for rare diseases in Hunan Province, and used the “Internet +” information technology to build a whole-course management system through cross-team cooperation, enabling medical staff and patients to “online” + Offline” interaction, medical consortium units “in-hospital + out-of-hospital” information exchange, and create a new closed-loop disease cycle management model that runs through the whole process of “pre-hospital, in-hospital, and post-hospital” for patients.
The Rare Disease Day series of activities are guided by Hunan Provincial Medical Security Bureau, Hunan Provincial Charity Federation, and Hunan Provincial Health Commission’s Medical Administration and Medical Management Office, and hosted by Xiangya Hospital of Central South University for three days. Training courses on new progress in rare disease diagnosis and treatment, large-scale free clinics and popularization of rare diseases, as well as large-scale free diagnosis and treatment activities for rare diseases will be held to help patients get medical treatment, insurance for diseases, and help for difficult diseases.