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IndoUSrare unveils agenda to boost diaspora role in rare disease research
IndoUSrare leadership and community members will participate in Rare Disease Day at NIH (RDDNIH) on Feb. 27.
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Anushka Pathak - Fri, 27, Feb 2026
- 12:53 EST
- 15
Logo of IndoUSrare / Courtesy: IndoUSrare
The Indo-US Organization for Rare Diseases (IndoUSrare) will mark International Rare Disease Day 2026 by outlining its 2030 plan aimed at expanding Indian and South Asian diaspora participation in rare disease research, patient advocacy, and orphan drug development.
The organization stated that rare disease clinical research and orphan drug programs should include structured engagement with the Indian and broader South Asian diaspora through IndoUSrare or aligned global channels.
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The framework focuses on patient-centered research, cross-border collaboration, and the use of artificial intelligence in therapy development.
IndoUSrare stated that India and the global Indian diaspora represent both a significant patient population and a scientific and entrepreneurial presence in genomics, biotechnology, and digital health.
By 2030, the organization aims to formalize diaspora engagement in research programs, strengthen Indo-US translational research collaboration, reduce diagnostic delays, expand AI-supported trial access, and support regulatory coordination across systems.
IndoUSrare leadership and community members will participate in Rare Disease Day at NIH (RDDNIH) on Feb. 27, at the National Institutes of Health campus in Bethesda, Maryland.
The event will bring together researchers, patients, and institutional stakeholders within the federal biomedical research system.
On Feb. 28, IndoUSrare will host a virtual dialogue titled “Innovation in Rare Diseases: Dr. Kartha in Conversation with Professor Levine.” Participants will include Professor James Levine, president, Fondation Ipsen, and Reena Kartha of IndoUSrare and the University of Minnesota.
The program will also feature a meet-and-greet with Pitch4Rare winners from CRISPR Bits, Iuva Labs, and Kaiteki Innovations.
International Rare Disease Day is observed annually to raise awareness of rare conditions. IndoUSrare, founded and chaired by Harsha K. Rajasimha, operates across patient advocacy, precision genomics, translational research, emerging technologies, and orphan drug development.
Discover more at New India Abroad.
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