The Izvestia Medical Center discusses medical care for orphan patients. Broadcast

On June 6, a press conference of the All-Russian Society of Rare (Orphan) Diseases on the topic "A life route for patients with rare diseases" is being held in the Izvestia press center.

They will talk about drug provision for patients with rare diseases, the further development of the medical care system, as well as topical issues of screening and patient support as they grow up.:

— Sergey Kutsev, Director of the MGNC, Chief Freelance Specialist in Medical Genetics at the Russian Ministry of Health, Academician of the Russian Academy of Sciences;

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

— Svetlana Mikhailova, Neurologist, Head of the Department of Medical Genetics at the Russian Children's Clinical Hospital;

— Lyudmila Kuzenkova, MD, Head of the Department of Neuropsychiatry and Psychosomatic Neurology at the National Research Medical Center for Children's Health of the Ministry of Health of the Russian Federation;

— Alexander Pampura, MD, Head of the Department of Allergology and Clinical Immunology at the Yu.E. Veltishchev Institute of Pediatrics and Pediatric Surgery of the Pirogov Russian National Research Medical University of the Ministry of Health of the Russian Federation;

— Natalia Smirnova, Lawyer at the All-Russian Society of Rare (Orphan) Diseases.