Izvestia News Center will tell about the results of 2024 and medical care for orphan patients

On March 25, at 13:00, a press conference of the All-Russian Society of Rare (Orphan) Diseases will be held at the Izvestia News Center on the topic: "From rare cases to common solutions: an integrated approach in the orphan field."

They will 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.

For FULL-time accreditation to the press center, you must send an email press-center@iz.ru send your full name, media name, series and passport number.

Important: Media representatives can participate in the press conference ONLINE with prior accreditation. To do this, send an email press-center@iz.ru Full name, media name, and mobile number linked to the installed Telegram app.

The broadcast will be available on the website iz.ru .

Media accreditation: press-center@iz.ru , tel. (495) 937-61-70, ext. 4805, 4236

Entrance for media representatives is subject to prior accreditation upon presentation of a passport.

Address: Moscow, Party lane, 1, room 57, building 3, 2nd floor.

Learn more about the events of the press center on the website.