The government has clarified that the recently-notified ‘National Policy for Rare Diseases 2021’, offers a provision for financial support up to Rs 20 lakhs for treatment of those rare diseases require a one-time treatment (diseases listed under Group 1 in the rare disease policy), under the umbrella scheme of Rastriya Arogya Nidhi and not under Ayushman Bharat- Pradhan Mantri Jan Arogya Yojana (PMJAY).

“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 the treatment of rare diseases are proposed under the Umbrella Scheme of Rastriya Arogya Nidhi (RAN) and not under Ayushman Bharat PMJAY,” the Union Ministry of Health and Family Welfare (MoHFW) stated in a press statement in a clarification after some news reports said that patients of rare diseases will get treatment under 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 utilised by Centres of Excellence for the treatment of all three categories of rare diseases as a first charge and the balance financial resources can also be used for research, it added.

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