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US FDA approves Novartis' gene therapy for rare muscle disorderThe US FDA has approved Novartis' new gene therapy, Itvisma, which is for patients aged two and above with spinal muscular atrophy. Itvisma...
Rs 17 crore for a single dose: Why Zolgensma is world's most expensive medicineThe high cost of Zolgensma, a one-time gene therapy used to treat spinal muscular atrophy (SMA) in children under two, is to limited patien...
How 1.5 lakh people collected Rs 10.5 crore to save a life of 18-month-old Delhi kidKanav's father initiated an online crowdfunding campaign, which gained viral momentum and received support from the Delhi government and Bo...
GST exemption on medicines for rare diseases is unlikely to provide any relief to those in need: Health activistsThe recent GST exemption on medicines for rare diseases in India is unlikely to help many patients as the drugs are still too expensive, sa...
Supreme Court dismisses petition seeking removal of GST, customs duty on medicines to cure spinal muscular atrophyCure SMA Foundation of India, a parent-led organisation, had approached the court seeking exemption of GST and customs duty on treatment of...
GST Council: No GST on petrol, diesel yet, compensation cess till 2026Finance minister Nirmala Sitharaman highlighted that the cess collected from July 2022 till March 2026 will be used solely for repayment of...
Pharma companies' charity hope for kids with rare spinal disorderThe rare disease affects one in every 8,000 children. The bigger problem, according to parents and doctors, is the lack of awareness about ...
Scrap taxes on drug import for spinal muscular atrophy, Stalin tells CentreFor children affected by SPA, gene-therapy has to be ideally given before the child reaches two years of age and this therapy costs over Rs...
Don't want Tom, Dick and Harry to collect money: HC on crowdfunding for treatment of rare diseasesJustice P B Suresh Kumar said the court does not want to interdict the crowdfunding process, but it wants the funds to go to the government...
Pinarayi Vijayan requests PM to waive tax on imported life-saving drug for childNoting that the medicine for SMA is 'prohibitively expensive' and 'unaffordable' for 18-month-old child's family, Kerala Chief Minister Pin...
Donation call: Rs 4 crore in 1 week can save Ayaansh7 days left to save Ayaansh with 4 crore: Donate on ImpactGuru.
Cristiano Ronaldo's blue castaway armband with the letter 'C' up for online auction in SerbiaThe money raised from the auction will help a baby suffering from spinal muscular atrophy.