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ORDI News letter July 2022

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MOUwith TIGS

Organization for Rare Diseases India (ORDI) and Tata Institute for Genetics and Society (TIGS) have exchanged the MOU. TIGS Director Dr.Rakesh Sharma and ORDI’s CO-founder & Executive Directr Mr.Prasanna Shirol,...

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Rare Diseases in India: ‘Orphan’ No More?

Of all cases of rare diseases across the globe, around one-third occur in India. Yet, these diseases—‘rare’ because they affect a relatively small number of people—are hardly given attention in...

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News Letter June 2022

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Support group tries to save 4-yr-old with rare genetic disorder

Since the diagnosis, on an average, the parents have been spending close to ₹50,000 every month and Palaash has now been advised to undergo surgery that will cost close to ₹20 lakh....

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Govt working on strategy to manufacture rare-disease drugs indigenously

With no domestic manufacturers developing drugs for people ailing with rare genetic diseases in India which is home to 8 crore such patients, the Government is working on a strategy...

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Rare Disease Diagnosis & Treatment: Rare Disease Girls Father Helps Thousands | The Better India

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News Letter May 2022

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Government’s crowdfunding plan for treating patients with rare diseases yet to take off

The total amount of donations channelled to the rare diseases portal is Rs 1.18 lakh till date, Bharti Pravin Pawar, minister of state for health and family welfare, told the...

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News Letter April 2022

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