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On March 2, 2022, an online conference dedicated to Rare Disease Day was held

On March 2, 2022, an online conference dedicated to Rare Disease Day was held at the International Multimedia Press Center of the «Rossiya Segodnya» International Information Agency.

The organizer of the event is the Russian Society of Orphan Diseases.

The meeting was moderated by Ekaterina Zakharova, Head of the Laboratory of Hereditary Metabolic Diseases of the Research Centre for Medical Genetics, Chairman of the Expert Board of the Russian Society of Orphan Diseases, Holder of an Advanced Doctorate (Doctor of Science).

The conference was attended by:

  • Alexander Rumyantsev, Member of the Presidium of the Russian Academy of Sciences, academician of the Russian Academy of Sciences, chief pediatric oncologist-hematologist of the Ministry of Healthcare of the Russian Federation;
  • Irina Myasnikova, Chairman of the Expert Board of the Russian Society of Orphan Diseases, member of the Board of Trustees of «Krug Dobra» Foundation;
  • Dmitry Kudlay, Member of the Board of the Association of Pharmaceutical Manufacturers of the Eurasian Economic Union;
  • Lyudmila Kuzenkova, Head of the Department of Psychoneurology and Psychosomatic Pathology of the National Medical Research Center for Children's Health of the Ministry of Healthcare of the Russian Federation;
  • Yuri Zhulev, Co-Chairman of the Russian Union of Patients, President of the Russian Society of Hemophilia;
  • Olga Germanenko, Head of the Foundation «Families with SMA»;
  • Tatyana Gremyakova, Head of the «Gordey» Foundation;

The experts discussed the prospects for the development of state programs, plans of changes in work of the «Krug Dobra» Foundation in 2022, as well as the readiness of the healthcare system to expand the neonatal screening program and the legislative regulation of drug provision. Also, the preliminary results of new diagnostic programs of the Research Centre for Medical Genetics, the possibilities of gene therapy, including in the treatment of adult patients, were discussed.