The Indo U.S. Organization for Rare Diseases (IndoUSrare) has announced new cross-border collaborations to strengthen research, diagnostics, and patient care ahead of its 2025 Bridging RARE Summit, scheduled for Nov. 2-4 at George Mason University’s Hylton Performing Arts Center.
The nonprofit, which connects rare disease stakeholders across the United States, India, and beyond, said the efforts aim to provide continuity in care despite rising tariffs, supply chain disruptions, and geopolitical tensions.
“Tariffs and tensions make headlines; patients can’t wait,” said Harsha K. Rajasimha, founder and executive chair of IndoUSrare. “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.”
IndoUSrare’s pre-summit work emphasizes practical solutions with immediate impact. Key areas include:
- Patient navigation and registries: Coordinated intake and multilingual support to connect families with specialists, trials, and financial aid.
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- Investigator and site networks: Building clinician and site partnerships to accelerate feasibility studies and referrals.
- Regulatory and ethics roundtables: Developing shared frameworks on consent, data privacy, and import/export rules.
- Remote-first trial tools: Expanding use of virtual visits, home health, and real-world data capture.
- Therapy access and supply chain resilience: Engaging manufacturers and payers to prevent disruptions in care.
“Families tell us the same thing in every country—please help us keep moving,” Rajasimha said. “That’s exactly what these collaborations are designed to do.”
The Bridging RARE Summit will convene patients, caregivers, clinicians, regulators, and industry leaders to discuss ways to shorten diagnostic timelines and expand equitable access to treatments.
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Highlights include a fireside chat between John F. Crowley, president and CEO of the Biotechnology Innovation Organization (BIO), and Rajasimha; a keynote address from Dr. Vijay Kumar, acting director of the U.S. FDA’s Office of Therapeutic Products; and plenary sessions featuring senior leaders from the NIH, FDA, and India’s All India Institute of Medical Sciences.
Industry speakers from Soleno Therapeutics, Entrada Therapeutics, BridgeBio, and Amicus Therapeutics are also scheduled, alongside leading patient advocacy groups such as the Friedreich’s Ataxia Research Alliance and the Ehlers-Danlos Society.
Other events include the Abbey Meyers Khushi Bridging RARE Awards and Gala, as well as #Pitch4Rare, a global startup competition showcasing new approaches to rare disease challenges.
For more information or to register, visit summit.indousrare.org