When tariffs and trade disputes dominate headlines between the U.S. and India, collaboration in science can feel like an afterthought. Yet one nonprofit is betting that rare disease research may succeed where diplomacy often stalls.
IndoUSrare, a U.S.-based patient advocacy and research alliance, has been quietly forging new collaborations across borders. Its mission: make rare disease research a global priority by uniting patient groups, scientists, industry leaders and policymakers from both countries. And with its Bridging RARE Summit 2025 scheduled for November 2-4, 2025 at George Mason University in Virginia, the organization is preparing to showcase how cooperation in rare disease research could outpace politics.
The Stakes In Rare Disease
Rare diseases are anything but rare. More than 10,000 conditions affect an estimated 400 million people worldwide, most without approved treatments. For patients, the hurdles are immense: years-long diagnostic odysseys, lack of access to trials, and therapies priced out of reach.
India represents both a challenge and an opportunity. The country has a massive, genetically diverse population and a rising biotech sector, yet rare disease infrastructure—diagnostics, registries, and funding—is still in early stages. The U.S., meanwhile, has strong regulatory frameworks and funding incentives such as the Orphan Drug Act. Together, the two nations represent a powerful but underutilized partnership.
Building Bridges Through Collaboration
To close that gap, IndoUSrare has been developing initiatives that span advocacy, research, and industry engagement:
- Patient & Corporate Alliances to align grassroots advocacy groups with pharmaceutical and biotech partners.
- Diversity in Clinical Trials, ensuring Indian patients and diaspora communities are represented in global data sets.
- Regulatory Dialogue, working toward harmonization between the U.S. FDA and Indian authorities to accelerate orphan drug development.
- Pitch4RARE, a showcase for biotech startups and innovators developing diagnostics and treatments.
For biopharma executives and investors, these efforts aren’t just altruism—they’re groundwork for tapping into one of the largest under-represented patient populations in the world. The organization describes, the 2025 summit “unites key leaders for Rare Diseases with a specific focus on the US & India, fostering global awareness & advocacy.”
The Summit As A Catalyst
The Bridging RARE Summit 2025 is where IndoUSrare plans to bring these threads together. The event will convene researchers, healthcare leaders, nonprofit executives, and investors to tackle persistent bottlenecks: data governance, cross-border clinical trials, patient recruitment, and equitable access.
Unlike many advocacy events, the summit emphasizes deal-making and ecosystem-building. Panels will explore how to streamline regulatory alignment. Pitch sessions will give early-stage companies visibility with funders. Patient awards and gala events will highlight lived experiences that humanize the science.
See full agenda: https://summit.indousrare.org/agenda
Why Now
The timing is not accidental. Rare disease R&D is under pressure. Development costs for advanced therapies remain high, and investor sentiment has cooled after a decade of biotech exuberance. At the same time, regulators and payers are demanding more evidence of real-world value while US tariffs and tensions put additional strain on the system.
“Tariffs and tensions make headlines; patients can’t wait,” said Harsha K. Rajasimha, Founder & Executive Chair of IndoUSrare, and Founder & CEO of Jeeva Clinical Trials. “Our community is choosing focus over fear—linking investigators, patient groups, and industry partners across borders to reduce time to diagnosis, de-risk trials, and sustain access to care. Quiet collaboration is our superpower.”
Expanding trial diversity and tapping into India’s patient base could address both scientific and economic challenges. Broader data sets strengthen regulatory submissions. Larger, more diverse enrollment can reduce development timelines. And global collaboration may unlock new funding channels—both philanthropic and commercial.
For funders, the calculus is shifting: rare disease is no longer just a niche medical challenge but a proving ground for new R&D models.
A Global Priority In The Making
At its core, IndoUSrare is reframing rare disease from a marginal issue into a test case for international scientific cooperation. If it can unite stakeholders across two of the world’s largest democracies, the impact will extend well beyond its 2025 summit.
Science doesn’t have borders, and patients don’t have time to wait.
For researchers, industry leaders, and investors watching the future of rare disease innovation, the real story may not be the therapies in development—but the bridges being built to make them possible.
