WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Diseases (NORD®) has announced that renowned journalist Becky Quick, co-anchor of CNBC’s “Squawk Box” and host of “CNBC Cures,” will moderate a premier rare disease CEO leadership dialogue at the upcoming 16th Annual NORD® Rare Diseases & Orphan Products Breakthrough Summit®.
The high-profile panel will feature top executives from global biopharmaceutical leaders—specifically the CEOs of BioMarin, Jazz Pharmaceuticals, and Otsuka—alongside NORD Chief Executive Officer Pam Gavin. Scheduled for 11 a.m. ET on Monday, Oct. 26, in Washington, D.C., the discussion forms a core component of the comprehensive three-day Summit running from October 25 to October 27, 2026. Industry professionals, researchers, patient advocates, and federal leaders convening for the event can access registration details and the full conference agenda online at NORDSummit.org.
Titled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” the session arrives at a transformative and pivotal crossroads for the rare disease community. Rapidly accelerating scientific discovery and technological innovation are unlocking unprecedented possibilities for the early diagnosis and effective treatment of conditions that have long evaded medical science. However, industry stakeholders increasingly recognize that scientific breakthroughs alone are insufficient. Realizing the full therapeutic potential of these innovations will require regulatory frameworks, robust public and private investment, healthcare infrastructure, and streamlined treatment delivery mechanisms to keep pace with laboratory advancements.
The leadership dialogue will dive deep into the strategic decisions, visionary leadership, and cross-sector partnerships necessary to capitalize on this historic moment. Panelists are expected to address the critical challenge of scale—exploring how the global health ecosystem can successfully advance and manufacture more treatments for a broader array of rare diseases, ensuring innovations transition seamlessly from theoretical promise to practical patient benefit.
The participating biopharmaceutical CEOs bring diverse perspectives representing major global enterprises with specialized rare disease portfolios and robust clinical pipelines. These organizations possess extensive experience navigating the complex pathways required to develop, approve, and deliver specialized therapies across a wide spectrum of rare conditions. Meanwhile, Pam Gavin will represent NORD’s independent, cross-disease patient and systems perspective. Gavin’s contributions will bridge the gap between high-level scientific and business strategies and the diverse, pressing unmet needs, daily care hurdles, and acute access challenges faced by individuals living with any of the more than 10,000 known rare diseases.
Moderator Becky Quick brings decades of high-level experience covering global business, finance, and markets, alongside a reputation for incisive interviews with many of the world’s most influential corporate leaders. In addition to her professional expertise, Quick possesses a deeply personal connection to the rare disease community as the parent of a child living with a rare condition. This dual lens positions her uniquely to guide a rigorous, empathetic, and pragmatic conversation among the industry leaders, exploring how executives can maximize the impact of emerging innovations and translate individual laboratory breakthroughs into widespread, systemic progress for the entire rare disease population.
“We are at an important moment for rare disease. Science is opening doors that would have been unimaginable even a decade ago, but discovery alone does not ensure those advances reach the people who need them,” said Pam Gavin, CEO of NORD. “Realizing that potential will require leadership across the rare disease ecosystem to remove barriers, keep pace with innovation and translate progress into better outcomes for more people across more rare diseases. That is why this conversation—and the Breakthrough Summit—matter right now.”
Now celebrating its sixteenth year, the NORD Rare Disease & Orphan Products Breakthrough Summit has established itself as a premier annual gathering. The event regularly attracts more than 900 key leaders, innovators, and stakeholders from every corner of the rare disease ecosystem to address the most pressing, complex issues shaping the future of research, clinical treatment, public policy, patient care, and healthcare access. The extensive 2026 programming spans a wide array of critical topics, including federal health and regulatory priorities, emerging therapies and cutting-edge technologies, venture and institutional investment, meaningful patient partnerships, and the systemic architecture required to systematically move breakthroughs from basic discovery to the bedside.
Reinforcing the Summit’s national significance, the 2026 program will also feature prominent remarks and interactive conversations with senior federal health leaders. Among the notable government officials scheduled to participate are Kyle Diamantas, J.D., Acting Commissioner of the U.S. Food and Drug Administration (FDA), and Dr. Jay Bhattacharya, M.D., Ph.D., Director of the National Institutes of Health (NIH). Their participation underscores the collaborative nature of the event and the vital partnership required between regulatory bodies, academic research institutions, industry developers, and patient advocacy groups.
The NORD Breakthrough Summit is intentionally designed around cross-sector collaboration to tackle complex, systemic challenges that no single organization, company, or government agency can solve in isolation. Comprehensive registration details, lodging information, and the complete multi-day agenda remain available for review at NORDSummit.org.
Founded in 1983, the National Organization for Rare Disorders (NORD®) operates as a leading independent, nonpartisan, 501(c)(3) nonprofit organization dedicated to driving identification, treatment, and education for rare disorders. NORD works tirelessly to improve the health and lives of the more than 30 million Americans living with rare diseases. Through dynamic partnerships with over 350 disease-specific member patient organizations, NORD champions continuous progress in rare disease research, expands access to vital patient services, and advocates for sensible public policies. Additional information regarding NORD’s ongoing initiatives, advocacy efforts, and resources can be found by visiting rarediseases.org.
