In a significant development for the entire rare disease community and stakeholders in India, the Delhi High Court has ordered steps for implementing the National Rare Disease Policy, 2021 formulated by the Central Government. Justice Prathiba M Singh, on May 15, directed the formation of a five-member committee to oversee the implementation of the policyRead more
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The court direction – given on 22 December 2022 – came following a batch of petitions filed by parents of children suffering from rare diseases such as DMD and hunter syndrome. In a relief for scores of rare disease patients suffering from Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome) patients,Read more