The Izvestia News Center's press center talks about modern approaches to early detection of orphan pathologies. Broadcast

A press conference on the topic "Rare diagnoses require systemic solutions" is being held at the Izvestia press center.

They talk about the availability of diagnosis and treatment of patients with rare (orphan) diseases, patient routing, drug provision, as well as the role of non-profit organizations in the care system.:

- Yuri Zhulev, Co-Chairman of the All-Russian Union of Patients, President of the All-Russian Society of Hemophilia;

- Irina Myasnikova, Co-Chairman of the All-Russian Union of Patients, Chairman of the Board of the All-Russian Society of Orphan Diseases;

- Nelya Poghosyan, Deputy Chairman of the Board of the All-Russian Society of Orphan Diseases;

- Natalia Smirnova, Lawyer at the All-Russian Society of Orphan Diseases, member of the Expert Council on Rare Diseases at the Committee on Health Protection of the State Duma of the Russian Federation.

Moderator — Ekaterina Zakharova, MD, Associate Professor, Head of the Laboratory of Hereditary Metabolic Diseases of the Federal State Budgetary Budgetary Institution "MGNC", Director of ANO INBO "OMICS".