The Rs 16-cr drug named Zolgensma was administered to 23-month-old baby Ellen with Spinal Muscular Atrophy (SMA) Type 1, which is an extremely rare genetic disease.If one is diagnosed with ultra-rare
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In what is touted as the first time in India and 4th case in the world, a joint team of doctors from the state government run Osmania General Hospital & Niloufer Hospitals performed a live liver t
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India has thelargest rare disease population in the world, said speakers attending the 'Dr NSrinivasa Rao Memorial Symposium - Rare Diseases & Alternative Treatment' atHyderabad on 25th June, sayi
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In what is seen as a step in the right direction, the government has hiked the grant for rare disease treatment from Rs 20 lakh to Rs 50 lakh as per a new office memorandum issued on May 19, 2022 by t
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Nine-month-old Advik Pravin Deshmukh from Maharashtra has been battling Propionic Acidemia – an ultra-rare disorder. It leaves one with a serious and life-threatening inherited metabolic disorder.&nbs
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There seem to be wide gaps in the FDA approval process asclinical trials data of 220 approved Orphan Drugs for rare diseases go missingin the US-based public registry ClinicalTrials.gov, finds a new s
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Knownotherwise as Kleine-Levin Syndrome (KLS), Sleeping Beauty Syndrome is known tobe one of the extremely rarest of rare diseases with medical literaturerecording only about 500 cases around the worl
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Despite being born with the rare genetic disorder Duchenne Muscular Dystrophy (DMD), 15-year-old K S S R A Praneeth managed to carve a niche for himself in chess for the disabled.He is a former junior
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The Indian Organization for Rare Diseases (IORD) is thrilled to call attention to the Word Rare Disease Day-2022 by organizing series of events to raise awareness about the issues of millions of India
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Reproduced below is the letter written to Prime Minister Shri Narendra Modi ji by IORD requesting for inclusion of World Rare Disease Day as a topic in the upcoming Mann Ki Baat Dear Shri Narendra Mod
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