The expert stated problems with receiving therapy for orphan patients

The main problems with receiving complex therapy and supervision from specialists in Russia are experienced by adult patients with orphan diagnoses, the chairman of the Board of the All-Russian Society of Orphan Diseases told Izvestia Irina Myasnikova.

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"According to a survey conducted by the BOE and the All–Russian Union of Patients, among 494 adult patients and 187 of their representatives from 73 regions, which we conducted in January — February 2026, no more than 21.4% of adult orphan patients receive comprehensive treatment and supervision from several specialists at once," she said.

At the same time, such treatment is absolutely necessary for them, since it allows them to ensure holistic health monitoring and timely respond to emerging complications, the expert emphasized.

Access to life-saving therapy, rehabilitation and necessary social benefits opens up the status of a disabled person, said the interlocutor of the editorial office. But not everyone has it.

Graduates of the Circle of Goodness Foundation often face the problem of receiving preferential treatment, Myasnikova added. Thanks to free therapy in childhood, they are in a so—called compensated state, and leaving the "Circle of Goodness" often interrupts this lifelong therapy - and this negates previously achieved results.

Read more in the Izvestia article:

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