National Policy for Treatment of Rare Diseases


Oct 29, 2004
Government Submits Rare Disease Policy to Delhi HC, Recommends Rs 100 Crore for Genetic Diseases

The government of India has finalised and approved the National Policy for Treatment of Rare Diseases. With an affidavit filed in the Delhi high court on Thursday (May 25), the Union health ministry also submitted a copy of this national policy. This development comes following an order from the Delhi high court on November 3, 2016, where the court gave six months to the government to finalise a policy for the treatment of rare diseases.

A rare disease is a health condition which has a low prevalence and affects a small number of people. Rare diseases include genetic diseases, rare cancers, infectious tropical diseases and degenerative diseases. They are chronic, debilitating, life threatening and often result in some form of handicap. Patients have often taken the government to court on this, because treatment of rare diseases is long, specialised and expensive.

“That in compliance of the order dated 3 November 2016, The National Policy on Treatment of Rare Diseases has been formulated and the Draft Policy has been approved by the Ministry of Health and Family Welfare,” says the government’s affidavit. “The policy will be published shortly but what is submitted to the court is the final version of it,” clarified Shiva Lakshmi, standing counsel for the government.