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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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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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ORDI News letter Nov 2023

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Clinical trial

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Nerve Disorder : A1 tool can Aid in screening

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Statement Regarding the Termination of Sanofi’s Proposed Acquisition of Maze Therapeutics’ Pompe Disease Drug

Following Sanofi’s decision to terminate its proposed acquisition of an exclusive license to Maze Therapeutics Inc.’s developmental drug to treat Pompe disease, the Federal Trade Commission moved to dismiss its...

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Upcoming Events

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 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.

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