Rare Diseases

Rare disease policy yet to see light of the day

Jaipur: A policy proposal for diagnosis and appropriate treatment of rare diseases was submitted in 2015, but it is yet to see the light of day owing to the apathy of the state government.

Rare disease is a segment of diseases which is still not in the priority list of the government. These diseases are chronic, severe and progressive in nature. According to the health experts, only one in 60,000 suffer from rare diseases. Currently, seven out of 49 lysosomal storage disorders are treatable, experts said.

The plight is that even health experts are not adequately aware about the diseases which affect diagnosis and treatment.

“A rare disease policy needs to be implemented at the individual state level. Most of the states are now sensitive to the issue. In Rajasthan, a policy proposal has already been submitted but it is only a matter of time when it would be…