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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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Centre to reframe policy for rare diseases, files affidavit in HC

The Central government has filed an affidavit in the Delhi High Court, underlying need to re-frame the policy for rare diseases which was finalised and approved last year. The Centre...

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Centre to reframe policy for rare diseases, files affidavit in HC

The Central government has filed an affidavit in the Delhi High Court, underlying need to re-frame the policy for rare diseases which was finalised and approved last year. The Centre...

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U-turn on fund for kids with rare diseases costly to treat

The Union health ministry has cited bureaucratic barriers and high costs to renege on its pledge to help treat patients, mostly children, with rare and expensive-to-treat diseases through a Rs...

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With no clarity on aid policy, children with rare diseases suffer

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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....

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Rare diseases policy still in draft state

Karnataka is the only state to have a Centre of Excellence for Rare Diseases at the government-run Indira Gandhi Institute of Child Health in Bengaluru. By Suraksha P Express News Service...

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NRI techies master the art of giving to the motherland

Washington DC: Call it the “Art of Giving to the motherland, the techies’ way”. After building America with their brains and grit, the Indian techies are going all out to...

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Experts raise concern over delay in implementation of rare diseases treatment policy

Health experts Wednesday highlighted the need for an immediate call-to-action for the implementation of the National Policy for Treatment of Rare Diseases, stating that the patients were suffering and losing...

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