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Data exclusivity will extend pharma monopolies, delay access to affordable medicines, activists say

As the Central Drugs Standard Control Organization (CDSCO) considers introducing data exclusivity provisions into India’s drug regulatory laws, healthcare activists warned that the move could delay access to lifesaving generic...

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Ultra Rare Genetic disorder Diagnosed in 11-Year old Girl / Pseudo – TORCH

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Times of India Article about Rare Diseases awareness

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Race for 7 Press Release from daijiworld.com

Mangaluru, Feb 21: The Organization for Rare Diseases India (ORDI) is set to host the 10th edition of its flagship event, RaceFor7, in Mangaluru for the first time. This symbolic run...

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Press Release for Save my Life

The Organization for Rare Diseases India (ORDI), a national umbrella organization representing the collective voice of all patients with rare diseases in India has launched Savemylife, a crowdfunding platform to...

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Race for 7 Press Release in Bio Spectrum

Dr Meenakshi Bhat, a pioneering clinical geneticist at the Centre for Human Genetics in Bangalore, and a long-time supporter of the rare disease community urged the government to make it...

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Race for 7 Press Release

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Race for 7 Press Release from Telangana Today.

Racefor7 has evolved into a pan India event, symbolizing the 7,000 known rare diseases with over 7,000 participants running 7 km. Since its inception in 2016 in Bengaluru, the initiative...

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Race for 7 Press Release From Express Healthcare

The Organization for Rare Diseases India (ORDI) announced the 10th edition of its flagship annual awareness run, Racefor7. The event marked the official launch of this year’s National poster and theme,...

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Delhi HC asks Centre to release ₹10 crore to AIIMS for treatment of rare diseases

Judge said the treatment of 18 patients had already begun and discontinuation of the treatment would have a negative repercussion on their health The Delhi High Court has refused to...

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