The Izvestia News Center talks about medical care for orphan patients. Broadcast

On March 25, a press conference of the All-Russian Society of Rare (Orphan) Diseases on the topic "From rare cases to common solutions: an integrated approach in the orphan field" is being held at the Izvestia press center.

They talk about the drug provision for patients with rare diseases and the further development of the medical care system for orphan patients, as well as the results of 2024.:

- Alexander Rumyantsev, Deputy of the State Duma, President of the Federal State Budgetary Institution "NMITS of Pediatric Hematology, Oncology and Immunology named after Dmitry Rogachev", MD, Professor, Academician of the Russian Academy of Sciences;

- Ekaterina Zakharova, MD, Professor, Head of the Laboratory of Hereditary Metabolic Diseases of the Moscow State Medical University. Academician N.P. Bochkova, Chairman of the Expert Council of the All-Russian Society of Rare (Orphan) Diseases;

- Yuri Zhulev, President of the All-Russian Society of Hemophilia, Co-chairman of the All-Russian Union of Public Associations of Patients;

- Irina Myasnikova, Member of the Expert Council on Rare Diseases of the State Duma Committee on Health Protection, Chairman of the Board of the All-Russian Society of Rare (Orphan) Diseases, member of the Board of Trustees of the Circle of Goodness Foundation;

- Vitaly Kadyshev, MD, Associate Professor, Head of the Department and Department of Ophthalmogenetics of the Federal State Budgetary Budgetary Institution "MGNC", leading researcher at the Laboratory of Genetic Epidemiology, Geneticist;

- Nato Vashakmadze, Head of the Department of Orphan Diseases and Prevention of Disabling Diseases, NCC No. 2, Federal State Budgetary Scientific Institution of the Russian Academy of Sciences. Academician B.V. Petrovsky (Central Clinical Hospital of the Russian Academy of Sciences), pediatric cardiologist.