The reporter learned from the National Health Commission on the 4th that in order to further strengthen the management of rare diseases in China, improve the scientific and rational preparation of rare disease catalogues, and strengthen the level of rare disease diagnosis, treatment and protection in China, the National Health Commission and the State Administration of Traditional Chinese Medicine revised the “Rare Disease Catalogue Preparation Work Procedure” formulated in 2018 to form the “Rare Disease Catalogue Preparation Work Procedure”. The new version of the work procedure clarifies the conditions that must be met at the same time for diseases included in the catalogue, additional applicants for the list of diseases, the requirements for application materials, the job functions of the National Health Commission's Expert Committee on the Diagnosis, Treatment and Protection of Rare Diseases and the Expert Committee Office, and the work procedures for adjusting the catalogue. The main contents of this revision include: first, adding situations that can be included in the rare disease catalogue and expanding the scope of diseases covered by the rare disease catalogue; second, adding applicants to the catalogue to give full play to the role of relevant professional institutions; third, adding the State Administration of Traditional Chinese Medicine as a co-issuing unit to clarify the responsibilities of traditional Chinese medicine authorities and strengthen the collaborative integration of traditional Chinese and Western medicine in rare disease prevention and treatment; fourth, optimizing the rare disease catalogue, which is updated in a timely manner according to actual conditions in practice; fifth, clarifying the rare disease catalogue for relevant departments to use as reference in their work.

The reporter learned from the National Health Commission on the 4th that in order to further strengthen the management of rare diseases in China, improve the scientific and rational preparation of rare disease catalogues, and strengthen the level of rare disease diagnosis, treatment and protection in China, the National Health Commission and the State Administration of Traditional Chinese Medicine revised the “Rare Disease Catalogue Preparation Work Procedure” formulated in 2018 to form the “Rare Disease Catalogue Preparation Work Procedure”. The new version of the work procedure clarifies the conditions that must be met at the same time for diseases included in the catalogue, additional applicants for the list of diseases, the requirements for application materials, the job functions of the National Health Commission's Expert Committee on the Diagnosis, Treatment and Protection of Rare Diseases and the Expert Committee Office, and the work procedures for adjusting the catalogue. The main contents of this revision include: first, adding situations that can be included in the rare disease catalogue and expanding the scope of diseases covered by the rare disease catalogue; second, adding applicants to the catalogue to give full play to the role of relevant professional institutions; third, adding the State Administration of Traditional Chinese Medicine as a co-issuing unit to clarify the responsibilities of traditional Chinese medicine authorities and strengthen the collaborative integration of traditional Chinese and Western medicine in rare disease prevention and treatment; fourth, optimizing the rare disease catalogue, which is updated in a timely manner according to actual conditions in practice; fifth, clarifying the rare disease catalogue for relevant departments to use as reference in their work.