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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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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 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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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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‘Handigodu’ patients to appeal for mercy killing

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Gov’t to reduce burden for rare disease patients

By Jung Hae-myoung Starting next year, more patients battling rare diseases will pay less for their medical expenses, as 100 disorders have been newly added to the government’s subsidy list,...

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Why Farber Disease May Be Misdiagnosed as Juvenile Idiopathic Arthritis

Farber disease is a rare, autosomal-recessive disorder caused by a mutation in the acid ceramidase gene, which leads to accumulation of sphingolipids in various tissues.1 It typically presents with a combination...

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Why the birth of first gene-edited babies in China has got the whole world worried and alarmed

Chinese scientist He Jiankui speaks at the Second International Summit on Human Genome Editing in Hong Kong on November 28, 2018. The announcement of the birth of babies with edited...

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