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Law on one-time payments for children with SMA to be considered in Buryatia

Law on one-time payments for children with SMA to be considered in Buryatia
Photo: Adisa Garmaeva / Instagram

Deputies of Buryatia will consider a bill to help children with spinal muscular atrophy of the first type. It is proposed to give such families 130 million rubles for medicine one-time.

According to the newspaper "Number one", The so-called law of Adisa will be considered by the deputies of the People's Khural on April 27. A financial and economic feasibility study is ready for the project. Earlier, residents of Buryatia collected 160 million rubles for one injection of the most expensive medicine in the world for Adisa, a girl who was born with type XNUMX spinal muscular atrophy.

The family managed to collect first 40 million rubles, but after negotiations with the shareholder of the Ozerny GOK Vladislav Sviblov and the head of the republic Alexei Tsydenov, the parents said that went to Moscow and soon their daughter will receive an injection... The entrepreneur offered to transfer taxes from the activities of the enterprise to the family. First, they will go to the account of the republican budget, and the deputies will decide to transfer them to Adise or not.

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