Latest News - #Spinal muscular atrophy (SMA)

Golikova and Putin discussed options for procurement of the drug "Spinrate"

Vice-Premier of the Russian Federation Tatyana Golikova has asked Russian President Vladimir Putin's charge to consider options for funding the purchase of the drug "Spinrate", used in the treatment of spinal muscular atrophy, the head of state agreed with her.

At a meeting with employees of social institutions and NGOs, the President was told about the cure "Spinrite" used for the treatment of spinal muscular atrophy, but its cost is very large, not all regions can provide patients. The President noted that he had discussed the disease with Golikova.

The family of the girl with the AGR from Kaliningrad collected 162 million rubles for the cure

Parents Milana Semenkovo from Kaliningrad, which is a rare genetic disorder - spinal muscular atrophy - managed to collect 162 million rubles for the purchase of one of the most expensive drugs in the world Zolgensma.

When the AGR is gradually lost motor function the child may stop moving or even breathing. The only cure for patients with SMA is registered in Russia, — "Spinoza", the injection must be done throughout the life time of four months as maintenance therapy. The effect will be lost if you miss even one shot.