Government of India recently notified “National Policy for Rare Diseases 2021”. There is a provision for financial support upto Rs. 20 lakhs under the Umbrella Scheme of Rastriya Arogya Nidhi for treatment, of those rare diseases that require a one-time treatment (diseases listed under Group 1 in the rare disease policy). Beneficiaries for such financial assistance would not be limited to BPL families, but the benefit would be extended to about 40% of the population, who are eligible under Ayushman Bharat- Pradhan Mantri Jan Arogya Yojana (PMJAY).
This financial support for treatment of rare diseases is proposed under the Umbrella Scheme of Rastriya Arogya Nidhi (RAN).
Besides, the Rare Diseases Policy also envisages a crowdfunding mechanism in which corporates and individuals will be encouraged to extend financial support through a robust IT platform for treatment of rare diseases. Funds so collected will be utilized by Centres of Excellence for treatment of all three categories of rare diseases as a first charge and the balance financial resources can also be used for research.