The Ministry of Health & Family Welfare has earmarked 900+ crore for rare diseases, including SMA, for initiating centralised procurement of rare disease treatments.
At a press conference on Wednesday, CureSMA urged the government to initiate the procurement process as directed by the court within 45 days, and said they would help in the process.
According to Union Health Ministry estimates, India has a staggering 8.4 to 19 crore individuals affected by rare diseases. Among these, SMA is a severe, progressive genetic condition that affects essential physical abilities like walking, eating, and breathing. It is also the leading genetic cause of death among children worldwide.
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