Minister of Healthcare Veronika Skvortsova has held a meeting of the public council on organising healthcare for patients with rare diseases, including medicine provision.
The government resolution includes a list of 24 groups of orphan (rare) diseases. These are life-threatening diseases or progressive chronic diseases that can lead to death or disability if left untreated. The Government is finalising the standards on healthcare for the rarest diseases on this list.
“With regard to the 24 forms of nosological diseases, we need at least twice as many standards – for hospital and outpatient clinics,” Ms Skvortsova said.
Currently the work on 22 of 24 groups has been completed.
The work on compiling the Federal Register of Orphan Diseases is being finalised. This Register will make it possible to conduct a serious analysis of the incidence rates, and detail the need for funding of medicine provision.
“The Register should be finalised by May 1,” Ms Skvortsova said.
Source: Ministry of Healthcare