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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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Kids die of rare diseases, as govt struggles fund shortage

The ministry of health and family welfare that is getting continuous requests from patient organizations for funds has reached out to the finance ministry seeking financial help. New Delhi: Several...

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A rare-disease entrepreneur follows an unconventional drug development path

In 2012, Ethan Perlstein challenged the academic status quo. Now as CEO of the start-up Perlara, can he do the same for the biotech industry? In 2012, molecular biologist Ethan...

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A comparative study of orphan drugs in US, EU & India

Today, more than 5,000 diseases are catalogued as “rare” by the scientific community, so long as they affect small sections of population. The drugs used for the treatment of rare...

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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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After new rare diseases policy, govt incentives needed for finding cures

Medical experts say India also needs an orphan drug policy to provide incentives to pharmaceutical companies to innovate and manufacture drugs for rare diseases...

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Delhi: 20-month-old refused Gaucher treatment due to treatment cost

For Maqsood Alam, saving his 20-month-old son, Ahsan, has become a personal challenge after he lost three of his children to Gaucher disease in the past. Ahsan, born in February...

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Sickle cell screening for newborns starts in Nagpur

NAGPUR: With incidence of sickle cell genetic mutation being 22-40% in certain high-risk groups in the region, it is imminent to undertake screening programmes for newborns, marriageable youth and pregnant mother....

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Inauguration of First Paediatric Neuromuscular Clinic at Bangalore Baptist Hospital

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BANGALORE BAPTIST HOSPITAL IN ASSOCIATION WITH ORGANIZATION FOR RARE DISEASES INDIA INAUGURATES THE FIRST PAEDIATRIC NEUROMUSCULAR CLINIC, IN THE COUNTRY!!!

Bangalore Baptist Hospital in association with ORDI – Organization For Rare Diseases, India, today inaugurated India’s very first Paediatric Neuromuscular Service, simply called “The Muscle and Nerve Clinic”. This specialty...

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