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The CCD is awarding grants of Rs. 15 lakhs to further innovative scientific research towards treatment of GNE Myopathy

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Children with rare disorder await govt.’s nod to start treatment

Despite court orders, Tamil Nadu is yet to roll out life-saving ERT Nine-year-old Praveen (name changed), suffering from a rare disorder, is awaiting the State government’s nod to avail of...

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Govt scraps local clinical trials for new medicines

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Here’s what inspired the story of Mard Ko Dard Nahi Hota

Vasan Bala’s upcoming directorial Mard Ko Dard Nahi Hota took the inspiration from a kid at a dentist’s clinic. While the name of the film takes us back to 1985’s...

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Teen with rare disease to live

City doctors rescue 13-year-old Mauritian from rare genetic disorder City doctors gave Ciara, a 13-year-old-girl from Mauritius, suffering from a rare Complement Deficiency genetic disease, a new lease of life. Suffering...

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Lack of policy hampers rare diseases treatment

Chennai: Having 95 patients registered with rare disorders at the Institute of Child Health and Hospital for Children (ICH & HC), patients are awaiting policy-level changes to avail of treatment...

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An article on rare disease day by Anandabazar Patrika, Kolkata

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Patients with rare diseases can’t afford high cost of treatment

JAIPUR: Father of a 21-month-old girl, who died of a rare genetic disorder called Gaucher disease on January 6, lives in the fear of losing his second child to the...

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Use compulsory license and put ceiling to curb prices of patented medicines: Government panel

The committee noted that the prices of patented anti-cancer and antifungal drugs are “on the higher side” and cited the example of Rs 1 lakh being the price for just...

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Going against the grain

A recent international symposium in New Delhi on wheat-related disorders drew attention to celiac disease, one of the world’s most under-diagnosed medical conditions. AS a person with celiac disease, the...

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