Indo US Bridging RARE Summit 2025 Unites Global Leaders to Accelerate Therapies for Rare Diseases

A global call to action—Bridging RARE Summit 2025 connects leaders from the US, India & beyond to transform the future of rare diseases.

WASHINGTON , DC, UNITED STATES, October 29, 2025 /EINPresswire.com/ -- The Indo US Organization for Rare Diseases (IndoUSrare) proudly announces the Indo US Bridging RARE Summit 2025, taking place November 2–4, 2025, at the Hylton Performing Arts Center, George Mason University in Manassas, Virginia. This premier hybrid event will bring together patients, scientists, policymakers, clinicians, innovators, investors, and advocates from across the United States, India, and around the world, working together 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 fundamental dimensions of progress: Patient Advocacy, Policy 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", says Dr. Harsha Rajasimha, Summit Chairperson, Founder of IndoUSrare, and CEO of Jeeva Clinical Trials. “The numbers are staggering - over 11,000 named rare diseases, 90% of these without any approved treatment options, less than 200 active clinical trials, but most struggle to reach their enrollment goals because 90% of the world’s population, largely in the global south, is left out from new drug development."

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

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

Shri. Rajesh Gooty will be honored with the Community Impact Award for his decades of unwavering service to the community and his extraordinary commitment to advocacy.

The evening will feature invocations, keynote reflections, and Indo-U.S. cultural performances by vocalist Alisha Thomas and the Indo Western Dances from artistes RIshitha Voleti and Shradha Suman, symbolizing unity in diversity.

The Gala will showcase Keynote addresses from Dr. Bobby Mukkamala (American Medical Association), Dr. Gary A. Puckrein (National Minority Quality Forum Pesh Patel (A Kidney Life), and invited talks from dignitaries, including Dr. Caitlyn Barrett (Milken Institute), Dr. Krishna Madiraju (Century Pediatrics), and lived experiences from patients and caregivers from around the globe. The Summit has received letters of support, including those from Shri Vinay Kwatra, India's Ambassador to the U.S.; Senator Reverend Raphael Warnock from Georgia; and Rich Bendis, a life sciences ecosystem builder in the BioHealth Capital Region.

Monday, November 3 – From Science to Strategy
Conference Day 1 opens with keynote addresses from Dr. Victoria Gamerman (RWD Insights) and Dr. Rakesh K. Mishra (Tata Institute for Genetics and Society). Sessions throughout the day will have plenary speakers and panelists exploring critical challenges and opportunities in:
- Global Epidemiology & Inequities
- Screening & Diagnosis
- Care Pathways & Novel Therapies
- Priorities for U.S.–India Partnerships
- Technology, Innovation, and AI in Rare Diseases

Working group discussions will work towards drafting actionable frameworks for cross-border collaboration in newborn screening, equitable representation of the Indian diaspora in clinical trials, innovations in R&D, and policy harmonization.,

The day will conclude with a “Biotech & Beer” networking event hosted by the Institute for BioHealth Innovation and Virginia Bio, connecting summit delegates with the dynamic DMV biohealth ecosystem.

Tuesday, November 4 – Policy, Partnerships, and the Future
Summit Day 2 will begin with a keynote address from Dr. Vijay Kumar (US FDA), and set the tone for the day’s spotlight on policy, regulation, and legislative advocacy for rare diseases through talks and panels featuring senior leadership from the U.S. Food and Drug Administration (FDA), senior regulatory experts, and advocacy leaders from the US and India.

A highly anticipated fireside chat with John F. Crowley, CEO of the Biotechnology Innovation Organization (BIO) will highlight leadership, policy, and innovation lessons for the rare disease community.

Sessions throughout the day will cover the latest innovations in clinical trials for rare diseases, global access and inclusion, and spotlight the learnings from case studies from neurological rare diseases.

The Summit concludes with the Pitch4RARE Startup Showcase, where cutting-edge ventures present innovative diagnostic, therapeutic, and digital-health solutions to a panel of investors and ecosystem leaders.

Driving Collaboration Beyond Borders
“The urgency of rare diseases transcends national boundaries,” said Frank Sasinowski, Regulatory Attorney and Founding Board Member at 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 2025 Summit is made possible through the generous support and collaborations. The organizing committee thanks 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; Raregiving Grant by the EveryLife Foundation for Rare Diseases; and other sponsors, including Amneal Pharmaceuticals, Amicus Therapeutics, and Virginia Bio. The committee acknowledges partnership from George Mason University’s Institute for BioHealth Innovation, along with Aarogyaseva, Association Of Child Neurology, India (AOCN), American Bazaar, BioHealth Capital Region, BioHealth Innovation, Bullpen Club, COMBINEDBrain, DakshamA Health, Global Genes, Patientworthy, Rare Disease Diversity Coalition (RDDC), Rare Revolution Magazine, Sir Ganga Ram Hospital, New Delhi, Terrapinn World Orphan Drug Congress USA, Tata Institute for Genetics and Society (TIGS), and all academic and advocacy partners across the U.S., India, and globally. From funding to strategic engagement, their support helps scale rare disease innovation across borders.

Join the Movement — Register Today
Participants can attend in person at the Hylton Performing Arts Center, Manassas, VA, or online from anywhere in the world. The hybrid platform is live and allows all participants to interact with fellow attendees and speakers, and view exhibits and posters virtually.

Register now at https://summit.indousrare.org.

Nisha Venugopal
Indo US Organization for Rare Diseases
+1 540-239-0465
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Come join us at the #BridgingRare Summit to engage in discussions about bridging gaps for the global rare disease community.

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