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Rare Disease Day: Health advocacy groups press for govt policy, say India’s numbers unknown

Rare diseases, including genetic disorders such as Hunter syndrome, Gaucher disease and Fabry’s disease, are expensive to treat, difficult to identify and extract a huge toll, mostly on the young, the experts said ahead of Rare Disease Day on Sunday.

Rare diseases are also not covered by insurance policies. It is imperative the government steps in to help these patients so they can lead a near normal life, Health groups in India said.

They have also urged the government to make newborn screening mandatory to be able to identify genetical problems at an early stage. The monthly treatment cost of such diseases can be anywhere between Rs 10 lakh and Rs 50 lakh, they said.

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Indians allowed to choose vaccination sites as government seeks faster roll-out

But the inoculation campaign has progressed slower than expected due to a reluctance of health and front-line workers to take the home-grown COVAXIN shot that was approved without late-stage efficacy data. Only 11% of vaccinated people have opted for the product developed by Bharat Biotech and the state-run Indian Council of Medical Research.

With the world’s highest tally of infections after the United States, India wants to vaccinate 300 million of its 1.35 billion people by August. The decision to give people a choice of vaccines could now speed up the roll-out, officials believe.

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Indian Insurance industry has recovered, pays Rs 9,000 crore Covid-19 pandemic claims :IRDAI Chief

While stressing the importance of Customer Data privacy, Khuntia added that the usage of data beyond a point of granularity should be avoided and insurers should not deny a coverage to the people on the ground, which is not under the control of the customers.
He was addressing a seminar on the theme of “Navigating Uncertainty: Insight-Driven Innovation “ organized by National Insurance Academy, in association with Swiss Re, on Friday.

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Lloyd’s insurer Brit says it will not insure Adani coal mine

Twenty-six Lloyd’s syndicates have now said they will not insure the mine, according to action group Insure Our Future.

Adani has begun construction at Carmichael together with an associated rail project, with plans to start producing 10 million tonnes of coal per year from 2021.

The coal industry is in the spotlight for its higher levels of greenhouse gas emissions than crude oil.

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India says virus variants not behind upsurge in cases

A top government health official confirmed the long-time presence of two mutants – N440K and E484Q – in those two states as well as elsewhere in the country and abroad. Authorities have also found the UK variant in 187 people in India, the South African one in six and one case of the Brazilian mutation.

“There is no reason today for us to believe, on the basis of scientific information, that these are responsible for the upsurge of the outbreak,” Vinod Kumar Paul, who heads a government committee on vaccines, told a news conference.

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