Report: Status of Rare Diseases

Of all cases of rare diseases across the globe, around one-third occur in India. Yet, these diseases—‘rare’ because they affect a relatively small number of people—are hardly given attention in the country. With its resource constraints, India continues to lag in awareness, diagnosis, and drug development relating to such diseases, and there is inadequate medical and scientific research, too. India formulated a National Policy on Rare Diseases (NPRD) in 2017, but it lacked clarity on disease coverage, patient eligibility, and cost-sharing. The revised policy was released in March 2021. This year, to mark the occasion of ‘Rare Diseases Day’—held annually on the last day of February—Observer Research Foundation (ORF) organised a virtual panel discussion of policy and clinical experts from around the globe on the subject, in partnership with The Sappani Foundation and Global Genes. This report is based on the ideas shared during the discussion.

By Mona and Shubhangi Patel