Articles about Spinal Muscular Atrophy

Toddler suffering from genetic disorder receives life-saving injection for free

03 Aug 2021

India
Toddler suffering from genetic disorder receives life-saving injection for free

The upcoming second birthday of Shivraj Daware, who hails from Nashik in Maharashtra, will be very special for his parents who claimed that the toddler, suffering from a rare genetic disorder, had become the first such patient from India who was given a Rs. 16 crore life-saving injection by a US firm for free.

Vijayan requests PM to waive tax on imported life-saving drug

09 Jul 2021

India
Vijayan requests PM to waive tax on imported life-saving drug

In a letter to PM Narendra Modi on Friday, Kerala CM Pinarayi Vijayan urged him to waive GST and Customs duty on a life-saving drug to be imported from the US for the treatment of an 18-month-old child suffering from Spinal Muscular Atrophy (SMA), a rare disease, in the state.

Couple raises Rs. 16cr in 42 days for son's treatment

05 May 2021

India
Couple raises Rs. 16cr in 42 days for son's treatment

A couple from Gujarat has raised Rs. 16 crore with the help of a crowdfunding platform to buy a gene therapy injection for the treatment of their 5-month-old son suffering from spinal muscular atrophy, a rare genetic disorder.

Child with killer disease gets new lease on life

17 Feb 2021

India
Child with killer disease gets new lease on life

14-month-old Fatima faced a bleak future afflicted with a killer muscular disorder, but a Rs. 16 crore "revolutionary" gene therapy she underwent after winning a lottery has given her a new lease on life.