The analysis of organization of medical care of wards of the foundation “The circle of Good” using orphan medications

In accordance with the Decree of the President of the Russian Federation № 16 of 05.01.2021 “On establishment of the Foundation supporting children with severe life threatening and chronic diseases including rare (orphan) diseases, the Circle of Good ”, the Foundation “Circle of Good” (hereinafter referred to as Foundation) was organized to support children with severe, life-threatening and chronic diseases including rare (orphan) diseases. The article analyzes status of orphan medications included in the Foundation lists of purchasing in terms of their registration in the Russian Federation, inclusion of orphan medication into list of vital and essential medications and into list of expensive medications. According to established status, limitations of accessibility of orphan medications outside of limits of activities of Foundation are identified.