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A good start: The Hindu Editorial on government support for continual treatment of those with rare diseases


Fund support from government is vital for continual treatment of those with rare diseases
It is binding on a welfare state to take care of every single citizen. Securing the wellbeing of every one, particularly those unable to help themselves, irrespective of whether they constitute a critical mass or not, is important. The recent notification of the National Policy for Rare Diseases 2021 after various interventions, including the court, is pegged on this principle of inclusion. A good start, it offers financial support for one-time treatment of up to ₹20 lakh, introduces a crowdfunding mechanism, creates a registry of rare diseases, and provides for early detection. In its final form, however, the policy has left the rare diseases lobby sorely disappointed on a crucial note. Rare diseases are broadly defined as diseases that infrequently occur in a population, and three markers are used the total number of people with the disease, its prevalence, and the availability/non ....

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