The Chairman of the Parliamentary Committee of the Chechen Republic on Social Policy, Health Care and Sports Adnan Nagaev organized a round table meeting on the topic «Current problems of the organization of medical care and supply of medicines to patients with rare (orphan) diseases 2023-2025 «.
During the meeting, the issues of a systemic approach to improving the quality of life of patients with rare (orphan) diseases and the dynamics of the development of the medical care system for patients with rare diseases in the Chechen Republic in the period 2013-2022 were also discussed.
The chief independent specialist in medical genetics of the Ministry of Health of the Russian Federation presented the main tasks of the medical genetics service in 2023 and the participation of federal and regional authorities in their solution. The experts also presented for discussion the normative and legal regulations of the federal and regional authorities concerning the care of patients with rare (orphan) diseases and the possibilities of their application and adaptation in the Chechen Republic.
We outlined the directions of legislative work of the Health Protection Committee of the State Duma of the Russian Federation on further steps in the development of improving the quality of care and life expectancy of patients with rare (orphan) and hereditary diseases.
The meeting, held in the form of a videoconference, was attended by: Member of the State Duma of the Russian Federation, Professor and Academician of the Russian Academy of Sciences, Chairman of the Council of Experts on Rare (Orphan) Diseases at the State Duma Committee on Healthcare Alexander Rumyantsev, Member of the Council Experts of the State Duma of the Russian Federation on Health Protection for Rare (Orphan Diseases) Natalya Smirnova, Member of the Council of Experts of the State Duma Committee on Health Protection for Rare (Orphan) Diseases Diseases, Member of the Council of Experts of the Circle of Good Charity Foundation Sergey Kutsev , Assistant to the President of the National Association of Organizations of Patients with Rare Diseases «Genetika» Elena Smirnova. Locally, the meeting was attended by: members of the Council of Experts of the Committee of the State Duma of the Russian Federation for health care in the case of rare (orphan) diseases Svetlana Karimova, Elena Krasilnikova and Olga Germanenko, Deputy Minister of Health of the Chechen Republic Elita Saratova, Deputy Director of TFOMS of the Chechen Republic Ramzan Gaziev, Head of TFOMS of the Chechen Republic Turpal-Ali Gairabekov, Director of the Department of Maternity and Childhood Taisiya Irbaieva, members of the Committee of the Parliament of the Chechen Republic for Social Policy, Health and Sport and other competent persons.
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