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.