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ORDI Newsletter Mar 2024

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HDSI Meeting

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From Rs 77,000 to Just Rs 600: India Manufactures World’s Cheapest Drug to Treat Sickle Cell Anaemia

Akums Drugs & Pharmaceuticals, aligning with the Narendra Modi government’s vision of eliminating sickle cell anaemia, has slashed the price of its key drug by 99 per cent. The firm...

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HC grants GST exemption on import of medicine for rare disease

The Kerala High Court has allowed the mother of a three-year-old boy suffering from Spinal Muscular Atrophy (SMA) to buy Risdiplam, an imported drug for treatment of the rare disease, without...

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ORDI Newsletter Feb 2024

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ORDI Newsletter Jan 2024

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COLLABORATE Summit 2023

Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25...

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Refocusing on Rare Diseases

The US Food and Drug Administration (FDA) approval in December 2023, of two milestone treatments, Casgevy and Lyfgenia, representing the first cell-based gene therapies for the treatment of a rare...

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Rare disease of children: Kerala Family plans to move SC seeking assisted death

KOTTAYAM : Smitha Antony and Manu Joseph seem to have hit a brick wall in terms of their physical and emotional agony. The couple from Kozhuvanal, in Kottayam district, are...

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Two-month-old receives life-saving bone marrow transplant

A two-month-old baby girl in Mumbai has become one of the youngest patients to receive a bone marrow transplant from an unrelated donor. The baby was diagnosed with a rare...

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