Orphan pathology in the Kyrgyz Republic.
The list of orphan diseases of the Kyrgyz Republic was approved by the order of the Ministry of Health of the Kyrgyz Republic (No. 637 of May 30, 2019 and No. 832 of June 21, 2021), which included 114 diseases.
Currently, in order to implement Articles 74, 75 of the Law of the Kyrgyz Republic "On the Protection of Health of Citizens in the Kyrgyz Republic" (No. 14 of January 12, 2024), in accordance with Articles 13 and 17 of the Constitutional Law of the Kyrgyz Republic, work is underway to approve amendments that will be made to the Rules for ensuring the provision of medical care (if necessary, outside the Kyrgyz Republic) to a specific patient with a rare (orphan) disease.
The list of diseases is formed taking into account the following criteria:
- the disease has a prevalence of no more than 10 cases per 100 thousand population and (or) is chronic with a severe course, leading without pathogenetic treatment to severe impairment of vital functions or death in childhood;
- for the treatment of the disease, in addition to the volume of medical care provided to citizens within the framework of the state guarantees program for the free provision of medical care to citizens, additional financial support is required for the provision of medical care to children with orphan diseases, including the provision of drugs and medical products, as well as technical rehabilitation equipment;
- for the treatment of the disease, there are drugs with pathogenetic action or medical products intended for the correction or treatment of life-threatening diseases registered in the near or far abroad;
- for the treatment of the disease, there is a treatment method with scientifically proven effectiveness;
- list of diseases is subject to revision at least once every 2 years.
The list of categories is formed taking into account the following criteria:
- the presence of features of the course of the disease, in which an unfavorable outcome may occur without the use of drugs, medical devices and technical rehabilitation means, etc.