The human cost of policy delays for India’s rare disease community

Every passing week, children with rare genetic disorders in India, are dying. These are not deaths caused by a lack of medical knowledge or unavailability of proven therapies. They are deaths caused by delay, by inaction, by administrative limbo, and by the lack of proper implementation of the National Policy for Rare Diseases (NPRD) 2021 .

As the Delhi High Court’s 2024 order to operationalise the NPRD and establish a National Fund for Rare Diseases (NFRD) with an allocation of ₹974 crores was not implemented, over 50 patients have died in the past two years. These were preventable deaths. Their treatments were halted when the initial I ₹50 lakh ceiling was exhausted, despite the Court’s clear intent to eliminate such limits and ensure continuity of care. Each month of delay brings m