REMEDIUMREMEDIUM1561-59362658-3534Joint-Stock Company Chicot142010.32687/1561-5936-2022-26-2-122-125Original Article“New” rare diseases and budget deficiency: is the problem “great”?KomarovI. A.iliya_komarov@mail.ruKrasilnikovaE. Yu.-AleksandrovaO. Yu.-N. A. Semashko National Research Institute of Public Health1512202226212212520062022Copyright © 2022,2022A new additional task for healthcare organizers of the constituent entities of the Russian Federation in the period from 2012 to 2021 becomes the satisfaction of the need of patients with rare diseases in therapy with drugs that were registered in the Russian Federation for the treatment of diseases that are not included in the programs of preferential drug provision for patients with rare (orphan) diseases of the federal and regional levels (“high-cost nosologies” and the List life-threatening and chronic progressive rare (orphan) diseases that lead to a reduction in life expectancy of citizens or their disability) - “new” rare diseases. Based on the results of the study, the number of diagnosed and treated patients with such rare diseases was established as well as the budget deficit for drug provision of patients with diseases from the noted List.rare diseasesorphan drugsdrug supplyhealthcarebudgetregions of the Russian Federationредкие болезниорфанные лекарственные препаратылекарственное обеспечениездравоохранениебюджетрегионы РФ1.Соколов А. А., Волгина С. Я., Нагибин О. А. Анализ оказания специализированной медицинской помощи пациентам с редкими заболеваниями // Проблемы стандартизации в здравоохранении. 2019. № 7-8. С. 51-62.2.Соколов А. А., Александрова О. Ю., Комаров И. А. Проблемы оказания высокотехнологичной медицинской помощи пациентам, страдающим редкими заболеваниями // Проблемы стандартизации в здравоохранении. 2019. № 7-8. С. 63-72.3.Ежегодный бюллетень Экспертного совета по редким (орфанным) заболеваниям. М.; 2021. 244 с.