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In January this year, the Delhi High Court directed the Union Government to finalise and operationalise the new National Health Policy for Rare Diseases by 31 March 2021. However, this year’s budget made no new allocation for such a plan. Rare diseases, as the name suggests, are health conditions that have a very low prevalence. At first glance, it might seem to be a marginal issue which affects a handful of people, but there are more than 7,000 diagnosed rare diseases in the world and over 350 million individuals suffer from them, with nearly one-fifth in India. Despite the fact that globally, the total number of people with rare diseases surpasses the population of the United States, efforts to properly diagnose and treat these conditions have been lagging. The small pool of patients has remained an impediment for drug and treatment development. The term “orphan diseases” is often used for these as less than five percent of rare diseases have treatment therapies available, m

United statesAyushman bharatUnion governmentMinistry of healthIndian council of medical researchDelhi high courtNational health policy for rare diseasesNational policy for rare diseasesNational health policyRare diseasesFamily welfareNational policyIndian councilMedical researchState governmentsIndian council of medical research icmr