Concern over lack of implementation of India's rare diseases policy

As Indians are at a higher risk of rare genetic diseases, the Indian government in May last year put in place a National Rare Disease Policy, allocating $12.86 million towards genetic disorders. However, implementation of this policy has yet to see the light of the day, with experts raising concerns over the long delay, reports The Pharma Letter’s India correspondent.

Rare diseases, which are often referred to as orphan diseases, are estimated to impact between 72 million and 96 million people in India.

Though the policy is the first major step in recognizing the need for a comprehensive strategy, and recommends genetic counselling as well as pre-conception and ante-natal screening, Prasanna Shirol, executive director of the Organization for Rare Disease India, said it is crucial that it is implemented in a prompt manner.