CrimeaPRESS reports:
The Circle of Kindness Foundation continues to provide Crimean children with expensive medicines.
Due to the centralized supplies of the fund in 2022 year, on the basis of applications from the main freelance specialists of the Ministry of Health of the Republic of Crimea, children with severe life-threatening and chronic diseases, including rare ( orphan) diseases, are provided with expensive medicines , — quotes the press service of the Acting Minister of Health of the Republic of Crimea Konstantin Skorupsky.
Thus, three children suffering from familial Mediterranean fever are provided with Canakinumab. One child with mucopolysaccharidosis type IV A was provided with Elosulfase alfa. Two more children diagnosed with Duchenne muscular dystrophy are provided with Translarna medicine. Five children with such a rare genetic disease as «tuberous sclerosis» are provided with the drug «Everolimus». Three children were provided with the combined drug Elexacaftor/Ivacaftor/Tezacaftor, intended for the treatment of cystic fibrosis.
Also, Crimean children suffering from spinal muscular atrophy are provided with the necessary medicines. For nine children, the fund purchased the expensive drug Nusinersen (trade name Spinraza), one package of which costs several million rubles. More 11 children with this disease are provided with Risdiplam , — said Konstantin Skorupsky.
In addition, applications for the supply of a number of more expensive drugs for children suffering from other rare diseases have been approved.
For reference: The Circle of Kindness Foundation was established by Decree of the President of Russia Vladimir Putin dated January 5 2021 No. 16 in order to provide medical care to children with severe life-threatening and chronic diseases, including rare (orphan) diseases. You can get acquainted with the procedure for obtaining the necessary assistance from the fund at the link: https://mzdrav.rk.gov.ru/ru/structure/2872
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