New Delhi: The ‘National Policy for Rare Diseases 2021’ has been approved by Union Health Minister Dr Harsh Vardhan and uploaded on the website of Ministry of Health & Family Welfare.
The policy, finalized after multiple consultations with different stakeholders and experts, aims to lower the extremely high cost of treatment for rare diseases. The focus is on indigenous research, with the help of a National Consortium to be set up with Department of Health Research as convenor.
The policy also envisages creation of a national hospital-based registry of ‘rare diseases’ so that adequate data is available to define rare diseases within the country.
A provision for financial support of up to Rs 20 lakh, under the Umbrella Scheme of Rastriya Arogya Nidhi, has been proposed for treatment of rare diseases that require a one-time treatment (diseases listed under Group 1 in the rare disease policy).
Beneficiaries of such financial assistance won’t be limited to BPL families, but will be extended to about 40% of the population who are eligible under Pradhan Mantri Jan Arogya Yojana.
The Policy also proposes a crowd-funding mechanism through which corporates and individuals will be encouraged to extend financial support through a robust IT platform for treatment of rare diseases.
Funds thus collected will be utilized by Centres of Excellence for treatment of all three categories of rare diseases as first charge and then the balance financial resources could also be used for research.
