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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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Rare disease treatment: Rs 100-crore fund not set up despite earlier claim, Centre tells Delhi HC

The Centre has told the Delhi High Court that it did not allocate an initial corpus for treatment of life-threatening diseases under the National Policy on Treatment of Rare Diseases...

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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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Centre takes u-turn on setting up of Rs 100 crore fund to treat rare diseases

A year after first announcing that a special fund of Rs 100 crore was being set up to help children suffering from rare diseases, the Centre has now taken a...

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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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No fund allotted to treat rare diseases despite claim in court: Centre

A petition on behalf of families of patients of rare diseases has sought government aid for treatment. It states that the ESI has the obligation not only under the Employees’...

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