In Russia, patients diagnosed with a rare neuromuscular disorder are fighting for access to a costly treatment to stop their condition from getting worse and which can help save them from dying young. The two medications so far registered in Russia to treat spinal muscular atrophy - Spinraza (Nusinersen) which is injected into the spine several times a year and Risdiplam (Evrysdi) which is taken orally every day - are among some of the most expensive drugs in the world.

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