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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 genetic disease Spinal Muscular Atrophy (SMA) Type 1 at the earliest stage, the only option available now is to get Zolgensma, the world’sRead more

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 transplantation on an 8-month-old child diagnosed with an extremely rare NISCH syndrome. The marathon surgical procedure by the teamRead more

India has the largest rare disease population in the world, said speakers attending the ‘Dr N Srinivasa Rao Memorial Symposium – Rare Diseases & Alternative Treatment’ at Hyderabad on 25th June, saying it is home to an estimated 25% of the world’s rare disease burden. Every year, it is estimated that some 250 odd newRead more

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 the Union Ministry of Health & Family Welfare Rare Diseases Cell, New Delhi. InRead more

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.   For Advik Pravin, the diagnosis of this rare metabolic disease can be termed to have happened on time as there is more likelihood of this ultra-rare disease not gettingRead more