Having a rare disease just makes it worse

February 27, 2015 8:05 PM

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With the country’s healthcare judging its patients by statistics, the Bengaluru-based Organisation of Rare Diseases India (ORDI) is drafting a state ‘orphan drug policy’ to aid those afflicted with ‘rare illnesses’.

India doesn’t have an orphan drug policy – named so, due to the research neglect into these drugs – which leaves thousands of sufferers in the lurch, says Prasanna Shirol, founder of ORDI, whose daughter is afflicted by the rare ‘Pompe’ disease.

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