Experts stated the need to move the orphan sphere to a new stage of development

The All-Russian Society of Orphan Diseases (BOE) organized a press conference at the Izvestia Medical Center on the topic: "Orphan Forum: a dialogue between representatives of government authorities, the medical and patient community." The VIII Orphan Diseases Forum was held on February 27-28, 2026.

"There has been great progress in the development of the orphan sphere. At the same time, the potential for further development is obvious — from achieving higher rates of patient provision with therapy to the transition to a unified national strategy in the orphan sphere. This will provide an opportunity for long—term planning, including under current programs, integration of the efforts of experts at all levels and the transition to a patient-oriented model," said Ekaterina Zakharova, MD, Associate Professor, Head of the Laboratory of Hereditary Metabolic Diseases at the Federal State Budgetary Scientific and Scientific Center.

"So far, barriers remain for adult patients at all stages — from primary diagnosis to drug provision and rehabilitation. There is an obvious need for system re—tuning in terms of logistics, routing, forecasting needs and developing regional infrastructure," said Irina Myasnikova, Chairman of the Board of the BOE.

This is confirmed by the findings of the largest orphan patient study, which surveyed 2,652 people from 86 regions of the Russian Federation.

• Almost 41% of respondents reported interruptions or unavailability of discounted medicines and specialized nutrition in 2025.
• 62% faced difficulties in receiving treatment.
• 40% noted the absence of specialized specialists for their disease in their region of residence.
• One in seven was forced to pay for procedures that should be provided free of charge under government guarantees.
• One third of the patients experienced routing difficulties.

"Almost half of the patients are satisfied with the help they receive. And this is a good result. Russia has the most balanced system of care for patients in need of expensive therapy," said Yan Vlasov, co—chairman of the All-Russian Union of Patients. Changing geopolitics, the development of innovative therapies, and the growing number of patients — these and other factors dictate the need to develop government programs, staffing, and clinical recommendations — joint decisions by the government and the patient community."

"An integrated approach to the development of the orphan sphere will allow timely referral of patients to federal centers without waiting for more complex conditions, avoiding interruptions in treatment during the transition of children to the adult network," added Tatiana Strokova, Head of the Department of Pediatric Gastroenterology, Hepatology and Dietotherapy at the Federal State Budgetary Scientific Institution FIT Nutrition and Biotechnology, Head of the Department of Gastroenterology and Dietetics at the Russian National Research Medical University. N.I.Pyro