Experts Urge Systemic Reforms in Rare Disease Care for Better Diagnosis and Treatment
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Rare Disease Care: Experts Urge Systemic Reform for Zero Bleeds, Holistic Management
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Firstpost•02-03-2026, 02:12
Rare Disease Care: Experts Urge Systemic Reform for Zero Bleeds, Holistic Management
•Medical experts call for urgent reforms in India's rare disease care, including hemophilia prophylaxis, national MS registries, and genomic diagnostics.
•Hemophilia care needs a shift from reactive to prophylactic treatment to prevent bleeds, reduce disability, and lower long-term costs.
•Multiple Sclerosis (MS) requires a national registry for data and recognition, with concerns raised about rigid disability benchmarks excluding deserving patients.
•Advances in genomic medicine (NGS, WES, WGS) offer hope for faster, more precise diagnosis of rare genetic diseases, especially in childhood.
•Experts advocate for a holistic, multidisciplinary approach and urge policymakers to prioritize rare diseases with dedicated schemes and inclusive disability assessments.
