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Centre Announces ‘One-Time’ Financial Assistance For Rare Disease Patients, Activists Calls It An Eyewash

Image Credits: Navodaya Times One year after the Centre had announced Rs 100 crore special fund for the children suffering from rare disease under National Policy on Treatment of Rare Diseases...

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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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Doctors pitch for mandatory newborn screening for inborn errors of metabolism

Doctors in the national capital have pitched for mandatory newborn screening (NBS) in the country stating Inborn Errors of Metabolism (IEM), often referred to as congenital metabolic diseases or inherited...

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Nerve stimulator helps 11 year-old fight rare form of epilepsy

Krishna Kini with his parents Dhiraj and Surekha It has only been three months since Krishna Kini, an 11-year-old boy has started taking interest in his surroundings — he now...

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Explain U-turn on rare-disease policy: Delhi high court

New Delhi: Taking a dim view of the “somersault” by the Centre on the policy to treat rare diseases, Delhi high court has summoned the Union health secretary for an...

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No policy for rare diseases, govt declares ‘one-time financial assistance’

The Union health minister announced a ‘one-time financial assistance’ in Parliament on Friday, but did not specify any amount Days after withdrawing the national policy for treatment of rare diseases (NPTRD),...

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Callous policy U-turn

Prasanna Shirol  Updated on January 06, 2019 Centre fails patients of rare diseases Promises are futile if they fail to deliver. When the National Policy on Rare Diseases was introduced in 2017,...

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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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