This much awaited draft of the National Policy For Rare Diseases 2020 released by the Union Ministry of Health and Family Welfare proposes to provide up to Rs 15 lakh for rare disease treatment to patients needing one-time treatment.

The government will provide a meagre one-time financial assistance of Rs 15 lakh to patients suffering from rare diseases. The decision comes as the government comes up with a new draft policy for the treatment of rare diseases, more than a year after it withdrew the earlier policy that promised an initial corpus fund of Rs 100 crore for the treatment of patients with rare genetic diseases. As an alternate, it has proposed creating a funding mechanism through setting up a digital platform for individuals and corporate donors to contribute to the treatment cost of patients with rare diseases. In its draft rare diseases policy 2020, the government has proposed a financial support of up to Rs 15 lakh under the umbrella scheme Rashtriya Arogaya Nidhi for those that require a one-time treatment. [2]