India’s First Government-Backed Biobank for Rare LSDs

In February 2026, researchers from 28 medical and research institutions across 6 states and 2 union territories compiled India’s first government-supported national biobank dedicated to Lysosomal Storage Disorders (LSDs) to support research, screening and treatment development.

Key Points

First National Biobank Initiative: The biobank brings together biological samples and detailed clinical, biochemical and genetic data from 530 patients across 15 states, creating a centralised national resource for research on rare genetic disorders.
Lysosomal Storage Disorders: LSDs are a group of over 70 rare inherited metabolic diseases caused by the absence of specific enzymes, leading to the buildup of toxic substances in body cells and severe health complications.
Severe Treatment Gap: Only about 7% of rare diseases have treatment options, and existing therapies for LSDs can cost over ₹1 crore per patient annually, making them inaccessible for most families.
High Disease Burden in India: More than 12,000 patients are estimated to be affected by LSDs in India, with the study cohort showing high mortality, as 60% of the 530 patients have already died and only a few are receiving treatment.
Data for Research and Screening: The biobank includes genomic DNA samples from blood, plasma and urine, along with enzyme activity and genetic information, enabling scientists to develop better diagnostic tools and early screening techniques.