In the framework of the Decree of the President of the Republic of Uzbekistan “ON MEASURES FOR FURTHER IMPROVEMENT OF MEDICAL AND SOCIAL ASSISTANCE TO CHILDREN WITH RARE (ORPHANE) AND OTHER HEREDITARY-GENETIC DISEASES No. PP-4440 on 09/07/2019″, it is planned to strengthening measures for the early diagnosis and treatment rare (orphane)disease and hereditary genetic diseases in children, the complete provision of patients with guaranteed medicines and medical devices. So, during 2020, it is planned to fully equip the laboratory of the Republican Specialized Scientific and Practical Medical Center of Pediatrics with a set of instruments for performing tandem mass spectrometry and preparing samples from biological materials; providing the Republican specialized scientific and practical medical center of Pediatrics with reagents and other consumables on an ongoing basis for the selective screening of the rare (orphanic) and other genetic diseases. Also, during this state program, it is planned to provide children with cystic fibrosis with orphan drugs (Dornaza-alpha) and special food products free of charge on the basis of the National Register; free provision of children with systemic onset of juvenile arthritis with orphan drugs (Tocilizumab) based on the National Register.
This is described in detail in the Shifotur program of the Dunyo bo’ylab television channel.