Elena Shuken, member of the State Duma's expert council for health protection for rare diseases: the federal reserve mechanism for co-financing the treatment of orphan patients has so far proven to be unprofitable. The current procedural criteria and requirements limit access to funds, and the mechanism itself does not cover several of the most expensive categories of orphan patients (and they are not on the federal lists). We are talking about the notorious mechanism of federal co-financing if the region does not have enough funds for orphans. The criteria for these "insufficient" funds provoked a lot of criticism back in the discussion phase of the project, but were still adopted in their original form. Elena Shoken highlighted the main problems with this mechanism: the first application campaign from the regions (and many regions refused to submit them in principle) showed that this mechanism is intended for regions that not only experience a budget deficit, but also in principle did not create an aid system for "rare" patients. As a result, when all the criteria are applied, only a few can actually get help. Regions submit few applications: they indicate that there is no need for joint funding or that the patient register is not growing. Sometimes it is said in inquiries that there are no orphan patients at all, which is contradicted by other data (for example from "The Good Circle"). That is, many people have no understanding of how many patients there are, which of them need help, etc. There are procedural issues. Refusals occur due to the absence of a separate budget section in the documents, violation of the application submission deadline, etc. No methodological support was organized for the regions - they do not fully understand how to ask for help. Well, in case of refusal, not everyone applies again. The picture shows statistics about patients outside of any lists. In 2026, 12 regions had no information on patients with rare diseases outside known programs. And 23 regions reported that there are simply no such patients.

Elena Shuken, member of the State Duma's expert council for health protection for rare diseases: the federal reserve mechanism for co-financing the treatment of orphan patients has so far proven to be unprofitable. The current procedural criteria and requirements limit access to funds, and the mechanism itself does not cover several of the most expensive categories of orphan patients (and they are not on the federal lists). We are talking about the notorious mechanism of federal co-financing if the region does not have enough funds for orphans. The criteria for these "insufficient" funds provoked a lot of criticism back in the discussion phase of the project, but were still adopted in their original form. Elena Shoken highlighted the main problems with this mechanism: the first application campaign from the regions (and many regions refused to submit them in principle) showed that this mechanism is intended for regions that not only experience a budget deficit, but also in principle did not create an aid system for "rare" patients. As a result, when all the criteria are applied, only a few can actually get help. Regions submit few applications: they indicate that there is no need for joint funding or that the patient register is not growing. Sometimes it is said in inquiries that there are no orphan patients at all, which is contradicted by other data (for example from "The Good Circle"). That is, many people have no understanding of how many patients there are, which of them need help, etc. There are procedural issues. Refusals occur due to the absence of a separate budget section in the documents, violation of the application submission deadline, etc. No methodological support was organized for the regions - they do not fully understand how to ask for help. Well, in case of refusal, not everyone applies again. The picture shows statistics about patients outside of any lists. In 2026, 12 regions had no information on patients with rare diseases outside known programs. And 23 regions reported that there are simply no such patients.