Clarification regarding National Policy for Rare Diseases 2021

This is with regard to the recently published news articlein a newspaper stating that patients of rare diseases will get treatment under Ayushman Bharat scheme of the Government.  In this regard, it is to clarify that in the 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) and not under Ayushman Bharat PMJAY.

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.