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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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Atrophy-related Protein BNIP3 May Be New Target in LOPD

The levels of BNIP3, a protein implicated in muscle fiber atrophy and increased autophagy — two features of late-onset Pompe disease (LOPD) — are increased in muscle samples from LOPD patients relative...

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Disabled Children Are Giving Up On Their Dreams,’ Ruchita’s Fight For Accessible Infrastructure At Schools

A 21-year-old fighting battle with a rare genetic disease calls for an inclusive infrastructure in schools and colleges for the disabled. Access to education for disabled students has become challenging....

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Preethu, who conquered SMA by becoming a CA, is no more

Kochi: Preethu Jayaprakash, 28, who became a Chartered Accountant by fighting the permanent disability arising out of the rare genetic disorder Spinal Muscular Atrophy (SMA), finally succumbed to her injuries...

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News Letter May 2022

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