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"spinal-muscular-atrophy-sma"

  • Hyderabad: Baby with rare genetic disease administered Rs 16 crore drug

    Hyderabad: A 23-month-old baby with Spinal Muscular Atrophy (SMA) Type 1, received a new lease of life with Swiss drugmaker Novartis coming forward to donate gene therapy costing Rs 16 crore. Baby Ellen was administered Zolgensma gene therapy, called the world’s costliest drug, at a private hospital in Hyderabad on August 6, her father Rayapudi […]
  • Without World’s Costliest SMA Drug (Rs 16 crore), My Son Will Not Survive

    As I sat on the creaky hospital bed with my 1-year-old Ayansh in my arms, tears began to slip from my eyes. Tears of fear and anguish, tears of helplessness and guilt, and finally, tears of shame. All the pent up sorrow and despair burst through my eyes like a broken dam as I trembled […]
  • What’s SMA disease that is affecting kids and why is treatment so expensive?

    Spinal muscular atrophy is a genetic disease affecting the part of the nervous system that controls our ability to move our muscles voluntarily.

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