The Circle of Kindness Foundation announced the start of collecting bids for the purchase of Zolgensma for children with spinal muscular atrophy (SMA). This was announced on Tuesday, June 29, by the chairman of the board of the organization, Archpriest Alexander Tkachenko.
According to him, this drug is not registered in Russia, however, thanks to the fund, children who have appropriate indications by decision of medical councils will be able to receive it. Currently, the organization is assessing the needs for this medicine in all regions of the country and completing medical documentation, as well as clarifying dosages and delivery times.
“The purchase of the drug Zolgensma, unregistered in Russia, will be the next step in the treatment of Russian children. I believe that such decisions are evidence that Russia is a social state according to the Constitution and in fact confirms this choice, “Tkachenko stressed.
Earlier in June, the expert council of the Circle of Kindness summed up the results of the fund’s work in less than half a year since its inception. As follows from the presented statistics, in less than six months the organization financed the purchase of 1670 vials of Mayozam for 16 children, 1776 vials of Strenzik for 19 children, 1826 vials of Spinraza for 561 children, 6981 vials of Evrisdi for 397 children, 8234 vials of Vimizim for 34 children and 142 bottles of Ilaris for 20 children.