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Doctors lobbying for making new-born screening mandatory

Inborn errors of metabolism can easily be detected at an early stage through the test and diseases can be prevented even before their symptoms appear. New Delhi: The doctors working in...

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India-specific genes behind Batten disease, finds Ahmedabad

AHMEDABAD: A city-based genetics researcher has found 12 unique variants of genes responsible for the neuronal ceroid lipofuscinoses (NCLs) — also known as Batten disease — in the Indian population....

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My Opinion: By Mr. Samir Sethi – President IRSF (Indian Rett Syndrome Foundation) – On order drugs (Price Control) amendment order 2019

I think this is a positive move of the Government. We know that pharma companies have been shying from entering the Indian market specifically with their new formulations and molecules...

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HARDA – लाइलाज बीमारी से जूझे 20 बच्चे

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इलाज या इच्छा मृत्यु !

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‘Handigodu’ patients to appeal for mercy killing

“Provide us treatment or grant us mercy killing.” That’s what patients suffering from ‘Handigodu’, a rare joint disorder, plan to ask the chief minister and the State Human Rights Commission. The Handigodu...

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New study may have miracle cure for muscular dystrophy

In a study that could help find the cure to muscular dystrophy, scientists from Centre for Cellular and Molecular Biology (CCMB) have decoded how proteins work inside the body to help regenerate...

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A RARE Victory For Rare Disease Patients In India In Grave Danger

One of the unfortunate realities of Indian society and governance institutions at large is the fact that there is not enough conversation on the lives of persons with rare disease. With discrimination rife...

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India’s rare diseases policy hangs in balance

A 10-member committee, formed  to draft a revised policy, has not held a single meeting yet More than 70 million people across India suffering from rare diseases do not have...

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Longer wait for patients as the government calls its own rare disease policy impractical

The policy was approved in May 2018 but no patients have received aid under its provisions. Now the government wants to reframe it. Seven-year-old girl with fibrodysplasia ossificans progressiva, a...

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