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

Shashank Tyagi, a 27-year-old Delhi-based businessman, was diagnosed with Gaucher’s disease when he was five. “I still remember I used to vomit after every small meal as food wasn’t able to digest and fit into my stomach,” he says, recalling the frequent fatigue and pain.

Gaucher’s is one of 50 rare genetic disorders collectively known as Lysosome Storage Diseases (LSD). Lysosomes are the recycling centres within our cells where enzymes break down unwanted substances. People with LSDs are born deficient in these enzymes, resulting in the collection of unwanted substances in the body, causing extensive damage