Rare Diseases Day Highlights Underutilization of Funds and Treatment Gaps for Patients in India
On Rare Diseases Day, concerns have been raised regarding the National Policy for Rare Diseases (NPRD) and the underutilization of allocated budgets. Despite a ₹299 crore allocation for 2025-26, only a small fraction (₹30.79 crore) has been utilized so far, leaving many patients without life-saving treatment. Families of children with disorders like MPS 2 and Gaucher disease report that funding caps of ₹50 lakh are insufficient for long-term care. The Supreme Court is scheduled to hear matters related to treatment interruptions, as the rare disease community calls for immediate intervention to ensure continuity of care and prevent further fatalities.
Key Points
- The National Policy for Rare Diseases (NPRD) provides a framework for treatment through designated Centres of Excellence (CoEs) across India.
- A significant portion of the allocated budget remains unspent while patients face life-threatening delays in therapy due to administrative hurdles.
- The current funding cap of ₹50 lakh per patient is often exhausted quickly, leading to a complete halt in life-saving care for many children.
- Approximately 2,000 rare disease patients in India are currently awaiting treatment, including those with Lysosomal Storage Disorders (LSD).
- The rare disease community is advocating for a more robust and sustainable funding model that does not leave patients in limbo once initial caps are reached.
Exam Facts
- Only ₹30.79 crore has been utilized by the NPRD out of the ₹299 crore allocated for rare disease treatment for the year 2025-26.
- The National Policy for Rare Diseases (NPRD) was notified to establish Centres of Excellence and provide a budget for patient assistance.
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