Rare diseases affect millions, yet limited patient numbers and fragmented data can make research and clinical trials challenging.
A new perspective by Dr. Alok Bhattacharya and Dr. Gayatri Saberwal explores how India could take inspiration from the Amul cooperative model to create a Patient Data Collective bringing together patient records, genetic information and real-world experiences to accelerate research and drug discovery.
With strong safeguards for consent, privacy and ethical data use, such a collective could empower patients while enabling researchers and clinicians to better understand rare diseases and develop treatments faster.
Published in The Hindu on 25th August 2026. Read the full article here