ZOLGENSMA

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• The recent launch of Evrysdi in India is a ray of hope for SMA patients: Dr Sheffali Gulati, Child Neurology Division, AIIMS

  SMA is a rare neuromuscular disorder which causes muscle weakness and progressive loss of movement. It is a life altering disease. SMA is usually suspected when babies are lethargic and have delayed motor developmental milestones. Timely diagnosis and early initiation of multidisciplinary management can ensure appropriate intervention to improve the quality of life.

  

• Pharma charity hope for kids with rare spinal disorder

  On Wednesday, Mahim resident Zeba Gufran was ecstatic as without her spending a rupee, her four-year-old son became the first in Mumbai to get started on a spinal injection treatment costing around Rs 5 crore in the first year.

  

• Crowdfunding: A solution to combat rare diseases

  According to global statistics, it takes seven years to diagnose any rare disease on average. SMA Type 1 cases can be diagnosed right at birth. But the struggle to afford this wonder drug is a challenge for families dealing with a condition like this. The curative drug for SMA - Zolgensma costs USD 2.1 million (approximately Rs 16 crores).

  

• Vadodra: Baby with rare condition to get Rs 16cr jab

  Four-months-old Dhaiiryarajsinh Rathod whose rare life-threatening medical condition needed a Rs 16 crore injection will eventually get the shot on Wednesday.

  

• Novartis SMA treatment could get FDA approval in May

  Food and Drug Administration agreed to an accelerated review of the Swiss drugmaker's treatment.