Bridging Hope, Building Equity: Indo-US RARE Summit 2025 Charts a Global Path to Cure the Uncurable

The Indo US Bridging RARE Summit 2025 & the Abbey Meyers Khushi Bridging RARE Awards Gala mark a historic moment for cross-border collaboration in rare diseases

MANASSAS, VA, UNITED STATES, November 18, 2025 /EINPresswire.com/ -- Co-hosted by the Indo US Organization for Rare Diseases (IndoUSrare) and George Mason University, the Indo US Bridging RARE Summit brought together over 300 participants from 14 countries, including scientists, patient advocates, government officials, biopharma executives, & policy experts who share a common goal: transforming the future of care for the 400 million people worldwide living with rare diseases.

In his opening keynote, Dr. Harsha Rajasimha, Founder and Chair of IndoUSrare, set an ambitious target for 2030: “No rare-disease clinical research or orphan-drug program should proceed without engaging the Indian, or broader South Asian, diaspora through IndoUSrare or equivalent channels.”

He announced the launch of the Global Organisation for Rare Diseases (GORD), an IndoUSrare-initiated entity headquartered in India, to expand beyond US–India collaborations and unite the global village for rare diseases. With dual bases in Virginia and Bengaluru, GORD aims to establish at least one partner contact in every country worldwide to drive global equity in access to diagnosis, therapies, and research participation.

The Summit was honored with letters of support and recognition from several US leaders:
Representative Suhas Subramanyam praised IndoUSrare “for building a bridge of hope between the United States and India” and celebrated this year’s honorees for transforming millions of lives through science and compassion.
US Senator Tim Kaine commended IndoUSrare “for connecting stakeholders across the rare-disease community to empower families and improve outcomes.”
US Senator Raphael Warnock extended gratitude to the leaders and participants, urging them to “keep the faith and keep looking up.”
Virginia State Senator Kannan Srinivasan emphasized the Summit’s policy relevance: “These breakthroughs, accelerating diagnostics and therapies, are essential complements to our policy efforts, ensuring medical progress translates into treatments families can truly afford.”
Their bipartisan encouragement underscores the growing recognition of rare-disease equity as both a moral and economic imperative.

Keynotes and special addresses highlighted a confluence of science, compassion, and policy:
John F. Crowley, CEO of BIO and former Amicus Therapeutics Chairman, delivered an emotional and visionary address: “When nations collaborate to cure rare diseases, we don’t just share data, we share destiny.”
Dr. Bobby Mukkamalla, President of the American Medical Association, emphasized the importance of physician advocacy: “Every clinician must become an advocate for patients with rare diseases, because awareness is the first prescription.”
Dr. Gary A. Puckrein, CEO of the National Minority Quality Forum, spoke on the intersection of equity and data science: “We cannot achieve precision medicine without inclusion; diversity is the engine of discovery.”

At the Abbey Meyers Khushi Bridging RARE Awards 2025 Gala Celebration, Hon. Rep. Suhas Subramanyam presented the prestigious awards named after Abbey Meyers, the pioneering founder of the US National Organization for Rare Disorders (NORD), and Khushi, a symbol of the human face of rare diseases. Honorees for 2025 were:
- Dr. Priya Kishnani, Duke University Medical Center, for her decades of translational research in lysosomal storage disorders and global advocacy.
- Dr. Pramod Mistry, Yale University School of Medicine, for pioneering work in Gaucher and metabolic-disease research, and leadership in charitable access to therapies, bridging academic and industry efforts.
- Dr. Madhulika Kabra, Indian Council of Medical Research, for advancing genetic diagnostics and newborn screening in India.
- Shri Rajesh Gooty, recipient of the RARE Community Impact Award, for mobilizing community support and diaspora engagement for patient families.

Their stories inspired a standing ovation and renewed commitment to sustained Indo-US collaboration. The Gala evening celebrated the human spirit of resilience. Families affected by rare diseases from both the US and India shared personal stories underscoring the urgency of global collaboration. Traditional Indian and fusion dance and music performances symbolized unity in diversity.

The Summit's sessions spanned themes ranging from screening, diagnosis, and care pathways to AI-driven clinical trial efficiency, data interoperability, and digital patient registries to rare-disease policy, biomanufacturing, and supply-chain resilience.

Bringing collaborative outcomes through partnerships, the Summit culminated with the establishment of four multi-stakeholder Indo US working groups:
1. Newborn Screening and Diagnostics,
2. Cross-Border Clinical Research & Data Harmonization
3. Policy and Regulatory Harmonization for Orphan Drugs
4. Affordable Innovation for Rare Diseases

Participants from 13 countries, including the US, India, UK, Nepal, Pakistan, Africa, and the Middle East, will work collaboratively, ensuring continuity beyond the Summit.

The Summit was powered by the generous support of sponsors, academic partners, and community allies who share IndoUSrare’s mission. The organizers thank Gold Sponsor: Soleno Therapeutics; Silver Sponsors: Entrada Therapeutics, BridgeBio, Fairfax County Economic Development Authority (FCEDA), 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 institutional, community, and media partnerships and support 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, New India Abroad, Patientworthy, Rare Disease Diversity Coalition (RDDC), Rare Revolution Magazine, Sir Ganga Ram Hospital, New Delhi, South Asian Herald, Terrapinn World Orphan Drug Congress USA, Tata Institute for Genetics and Society (TIGS), TV Asia; and all academic and advocacy partners across the US, India, and globally.

Looking ahead, the post-Summit resolutions reinforced IndoUSrare’s and GORD’s commitment to making cross-border collaboration the default model for rare-disease research. As Dr. Rajasimha summarized: “The next phase is about scaling partnerships into a global ecosystem that turns today’s hope into tomorrow’s cures. Together, IndoUSrare and GORD will drive a decentralized, equitable, and AI-enabled framework for global rare-disease research.”

Preparations are already underway for the Bridging RARE Summit 2026, to be held in India in partnership with premier research and academic institutions, and government and industry allies.

IndoUSrare is a 501(c)(3) non-profit organization based in the USA, dedicated to connecting rare-disease stakeholders across borders through research, advocacy, and education. GORD is an allied entity of IndoUSrare in India, committed to uniting global efforts to eliminate barriers in rare disease diagnosis and treatment access. Together, these twin organizations form a powerful alliance bridging gaps across continents.

Nisha Venugopal
Indo US Organization for Rare Diseases
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Indo US Bridging RARE Gala 2025: Honorees and Leaders Unite for Global Rare Disease Advocacy

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