The Indo US Organization for Rare Diseases (IndoUSrare) has announced that the Indo-US Bridging RARE Summit 2025 will take place from November 2–4, 2025, at the Hylton Performing Arts Center, George Mason University, in Manassas, Virginia.

According to a statement from IndoUSrare, the hybrid event will unite patients, scientists, policymakers, clinicians, innovators, investors, and advocates from the United States, India, and around the world. Together, they aim to accelerate the discovery and accessibility of therapies for millions living with rare diseases.

Under the 2025 theme, “Strengthening the Framework for Inclusive and Accessible Patient-Focused Clinical Research in Rare Diseases,” the Summit will explore six core areas of progress:

Patient Advocacy; Policy and Legislation; Government Oversight; Data Standardization; Technological Enablement; and Global Epidemiology-based Research. 

“The Bridging RARE Summit represents our collective commitment to addressing the grand challenges facing the rare diseases community,” said Summit Chairperson, Founder of IndoUSrare, and CEO of Jeeva Clinical Trials, Dr. Harsha Rajasimha. “The numbers are staggering — over 11,000 named rare diseases, 90 per cent of these without any approved treatment options, less than 200 active clinical trials, but most struggle to reach their enrollment goals because 90 per cent of the world’s population, largely in the global south, is left out from new drug development.”

The Summit opens with an evening gala on November 2, celebrating pioneers and unsung heroes in the rare disease ecosystem. The Abbey Meyers Khushi Bridging RARE Awards and Gala will honor three distinguished leaders for their cross-border collaboration and lifelong contributions to patient impact: Dr. Madhulika Kabra, Indian Council of Medical Research (ICMR), India; Dr. Pramod K. Mistry, Yale University Medical Center, USA; and Dr. Priya Kishnani, Duke University Medical Center, USA.

Special congratulatory remarks will be delivered by Dr. Abbey Meyers, founder of the U.S. National Organization for Rare Disorders (NORD).

Rajesh Gooty will receive the Community Impact Award for decades of advocacy and service. The evening will also feature cultural performances by vocalist Alisha Thomas and Indo-Western dancers Rishitha Voleti and Shradha Suman, celebrating unity in diversity.

Keynote addresses will be delivered by Dr. Bobby Mukkamala (American Medical Association), Dr. Gary A. Puckrein (National Minority Quality Forum), and Pesh Patel (A Kidney Life). Invited speakers include Dr. Caitlyn Barrett (Milken Institute) and Dr. Krishna Madiraju (Century Pediatrics), along with patients and caregivers sharing lived experiences. Letters of support have been received from India’s Ambassador to the U.S., Vinay Kwatra; Senator Raphael Warnock (Georgia); and Rich Bendis, a life sciences ecosystem builder in the BioHealth Capital Region.

The Conference Day 1 (November 3) will open with keynote addresses by Dr. Victoria Gamerman (RWD Insights) and Dr. Rakesh K. Mishra (Tata Institute for Genetics and Society).

Panel discussions will focus on: Global Epidemiology & Inequities; Screening & Diagnosis; Care Pathways & Novel Therapies; U.S.–India Partnerships; and Technology, Innovation, and AI in Rare Diseases.

Working groups will draft actionable frameworks for newborn screening, equitable representation of the Indian diaspora in clinical trials, and policy harmonization. The day will conclude with a “Biotech & Beer” networking reception, hosted by the Institute for BioHealth Innovation and Virginia Bio, connecting global delegates with the DMV’s biohealth ecosystem.

On November 4, Day 2 will open with a keynote from Dr. Vijay Kumar (U.S. FDA), setting the stage for discussions on policy, regulation, and legislative advocacy. Senior leadership from the U.S. Food and Drug Administration, regulatory experts, and advocacy leaders from both countries will examine strategies to expand clinical research participation and access.

A highlight of the day will be a fireside chat with John F. Crowley, CEO of the Biotechnology Innovation Organization (BIO), focusing on leadership, innovation, and the path forward for the rare disease community. Sessions will explore cutting-edge clinical trials, global inclusion, and insights from neurological rare disease case studies.

The Summit will close with the Pitch4RARE Startup Showcase, where innovative ventures will present diagnostic, therapeutic, and digital-health solutions to investors and ecosystem leaders.

“The urgency of rare diseases transcends national boundaries,” said Frank Sasinowski, Regulatory Attorney and Founding Board Member of IndoUSrare. “Through Indo-US partnerships, we are aligning science, policy, and compassion to change the future of medicine for 400 million people worldwide affected by rare disorders.”

The Summit organizing committee expressed appreciation to its sponsors and partners, including Gold Sponsor: Soleno Therapeutics; Silver Sponsors: Entrada Therapeutics, BridgeBio, Fairfax County Economic Development Authority (FCEDA); Lanyard Sponsor: Prince William County Department of Economic Development; Session Sponsors: CloudThrottle, Immigrants First; and Raregiving Grant: EveryLife Foundation for Rare Diseases. 

Additional supporters include Amneal Pharmaceuticals, Amicus Therapeutics, and Virginia Bio.

IndoUSrare also acknowledged institutional partners such as George Mason University’s Institute for BioHealth Innovation, Aarogyaseva, Association of Child Neurology India (AOCN), American Bazaar, BioHealth Capital Region, COMBINEDBrain, Global Genes, Patientworthy, Rare Disease Diversity Coalition (RDDC), Rare Revolution Magazine, Sir Ganga Ram Hospital (New Delhi), Terrapinn World Orphan Drug Congress USA, and the Tata Institute for Genetics and Society (TIGS), among others.

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