To arrange first drug approved by FDA, US. for treatment of Duchenne muscular Dystrophy .
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My 19 years son, Shivam is suffering from Duchenne Muscular Dystrophy for last 13 years and fighting for survival.We the parents are extremely agonized to see our son dying day by day.
There was no treatment available in the globe for Duchenne Muscular Dystrophy disease. Recently US, FDA has approved first drug namely Exondys 51 ( eteplirsen) injection for DMD patient with confirmed mutation of the dystrophin gene amenable to Exon 51 skipping. My ill-fated son is also a patient with confirmed mutation of the dystrophin gene amenable to Exon 51 skipping. One out of 3600 population are suffering from DMD. Approximately 13% of DMD patient are effected with confirmed Exon 51 skipping.
The medicine Exondys 51 ( eteplirsen) injection is still not commercially launched by any pharmaceutical company. It is only available with SAREPTA THERAPEUTICS Company, and cost of treatment per annum may comes to Rs 2 Crs( INC). Most of the parents are not in a position to sustain the cost.
Earnest request to Honorable Prime Minister, Government of India for kind consideration to bring the medicine Exondys 51 (eteplirsen) injection for treatment of patient of Duchenne Muscular Dystrophy disease at AIIMS, New Delhi and to save the ill-fated Indian parents from the agony.
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