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SMA TREATMENT
India's Got Latent row: Supreme Court raps Samay Raina over disability jokes, asks Center to consider stricter law like SC-ST ActThe Supreme Court urged the Centre to consider a law, similar to the SC-ST Act, to penalize derogatory remarks against persons with disabil...- Natco wins patent battle to launch generic 'Risdiplam'A Delhi High Court ruling favors Natco Pharma against Roche's rare disease drug. Natco can now launch generic risdiplam, used for spinal mu...
- Delhi HC allows Natco Pharma to launch risdiplam, rejects Roche pleaThe Delhi High Court has permitted Natco Pharma to launch its affordable generic version of risdiplam, a crucial drug for spinal muscular a...
- Roche made over 100 times the cost of a medicine that it sold in India, calculations show; company defends itselfA recent report in The Times of India reveals that Roche may have profited immensely from risdiplam, a drug for spinal muscular atrophy (SM...
- SC stays order asking Centre to procure drugs for patient with rare disorderThe Supreme Court has temporarily stayed a Kerala High Court order directing the Centre to provide additional funds for a patient's expensi...
- Spinal Muscular Atrophy: Indira Gandhi Institute to offer free treatment for childrenKarnataka launched free treatment for Spinal Muscular Atrophy (SMA) at the Indira Gandhi Institute of Child Health in Bengaluru. The initia...
- Could a Rs 72 lakh drug cost just Rs 3,000? A 24-year-old's courtroom revelationA 24-year-old SMA patient in Kerala High Court revealed that Risdiplam, a crucial SMA drug, could be locally produced for Rs 3,000 annually...
- 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...
- Imbalance in brain chemicals may be the culprit behind OCD: StudySome people with OCD are engaged in rituals for much of their waking life and cannot even leave their homes. As the condition is difficult ...
- 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...
- 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 ...
- COVID-19: Mumbai gets its first genome sequencing labThe lab was inaugurated virtually by Maharashtra Chief Minister Uddhav Thackeray. Another project- Spinraza therapy for spinal muscular atr...
- Roche launches spinal muscular atrophy treatment drug in India priced at around Rs 6 lakh per bottleSince its launch, over 4,000 SMA patients across over 50 countries have benefitted from the drug, Roche said in a statement.
- 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...
- Mothers’ struggle behind nod for ‘compassionate use’ drugsWhile the mothers waited for guidelines, seven of the 34 children chosen for compassionate use of the new drug, Risdiplam, passed away. “It...
- Novel drug shows hope for infants with muscle diseaseNew York, Dec 7 (IANS) A new experimental drug may have the potential to improve the quality of life for infants suffering from a rare, let...
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