2021
DOI: 10.3389/fphar.2021.754073
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An Analysis of Medical Care Services for Children With Rare Diseases in the Russian Federation

Abstract: Rare diseases continue to present numerous challenges for the medical field worldwide. Understanding innovative mechanisms of service provision for patients with rare conditions through shared communication across different healthcare systems should be encouraged. This study presents the organization of medical care for people with rare diseases in Russia, while also exploring the epidemiology of both life-threatening and chronic, progressive, rare diseases. Further, the regulation of medical care provision is… Show more

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Cited by 5 publications
(3 citation statements)
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“…Russia —The NBS program expanded to include 36 new conditions, including SCID and SMA, on 1 January 2023 with screening available in 10 centers across the country [ 975 , 976 ]. NBS is carried out at the expense of budgetary allocations of the Regions of the Russian Federation and is free to the public [ 977 ]. A 2017 review of the past, present, and future of pediatrics in Russia helps to better understand national pediatric healthcare issues [ 978 ].…”
Section: Resultsmentioning
confidence: 99%
“…Russia —The NBS program expanded to include 36 new conditions, including SCID and SMA, on 1 January 2023 with screening available in 10 centers across the country [ 975 , 976 ]. NBS is carried out at the expense of budgetary allocations of the Regions of the Russian Federation and is free to the public [ 977 ]. A 2017 review of the past, present, and future of pediatrics in Russia helps to better understand national pediatric healthcare issues [ 978 ].…”
Section: Resultsmentioning
confidence: 99%
“…Non-EU countries also have national regulations to ensure coverage of RD drugs. In Russia, for example, there is a special program that provides financing for 12 high-cost diseases at the federal level [ 152 ].…”
Section: Current Situation and Key Challenges Related To Rdsmentioning
confidence: 99%
“…To date, the nationwide NBS program in Russia includes: phenylketonuria, congenital hypothyroidism, congenital adrenal hyperplasia, galactosemia, and cystic fibrosis. However, Primorsky and Moscow regions are currently performing tandem MS ENBS to identify 39 and 11 diseases, respectively, and the national expansion of NBS is being discussed [ 61 ].…”
Section: Worldwide Overview Of Primary Carnitine Deficiency Newborn S...mentioning
confidence: 99%