Dikhyaa Mohanty 
The ‘National Policy for Rare Diseases 2021’ has been approved by Union Health Minister Dr. Harsh Vardhan and uploaded on the website of the Ministry of Health & Family Welfare.
As per the official report after multiple consultations with different stakeholders and experts, the policy aims to lower the extremely high cost of treatment for rare diseases and the focus is on indigenous research, with the help of a National Consortium to be set up with the Department of Health Research as convenor.
The report further informs that the policy also envisages the creation of a national hospital-based registry of ‘rare diseases’ so that adequate data is available to define rare diseases within the country.
Under the Umbrella Scheme of Rashtriya Arogya Nidhi, a provision for financial support of up to Rs 20 Lakh has been proposed for the treatment of rare diseases that also requires a one-time treatment where 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 the treatment of rare diseases.
Funds that are collected will be utilized by Centres of Excellence for treatment of all three categories of rare diseases as the first charge and then the balance financial resources that could be later used for the research work.
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