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Spinal Muscular Atrophy: Indians who need a $2.1m drug to fight rare disease

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Affan, seven, and Erhan, five, have Spinal Muscular Atrophy (SMA) – a rare genetic disorder that causes muscle deterioration and affects breathing. Physiotherapy appointments alone cost the family 40,000 rupees ($480; £395) a month, and their sons need constant care as they cannot sit, stand or walk independently.



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