WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Diseases (NORD®) has announced that Becky Quick, co-anchor of CNBC’s “Squawk Box” and host of “CNBC Cures,” will moderate a prominent rare disease CEO leadership dialogue at the upcoming NORD® Rare Diseases & Orphan Products Breakthrough Summit®. The high-profile panel will feature the chief executive officers of BioMarin, Jazz Pharmaceuticals, and Otsuka alongside NORD Chief Executive Officer Pam Gavin.
The collaborative discussion, officially titled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” is scheduled for 11 a.m. Eastern Time on Monday, October 26, in Washington, D.C. The panel forms a centerpiece of the three-day Summit, which runs from October 25 through October 27, bringing together diverse voices from across the healthcare, regulatory, and patient communities.
This year’s dialogue arrives at a critical juncture for the rare disease landscape. Rapid advancements in science, genetics, and technology are unlocking diagnostic and therapeutic possibilities that were considered out of reach just a decade ago. However, industry stakeholders emphasize that scientific discovery alone is insufficient. Realizing the full therapeutic potential of these breakthroughs will require regulatory frameworks, forward-thinking public policies, sustained capital investment, resilient healthcare infrastructure, and streamlined treatment delivery systems to keep pace with innovation. The upcoming panel will examine the strategic leadership decisions, corporate strategies, and cross-sector partnerships needed to navigate this pivotal moment, directly addressing the enduring challenge of scale—specifically, how to successfully advance more treatments to benefit a greater number of rare disease communities.
The biopharmaceutical CEOs participating in the dialogue bring multifaceted perspectives from major global enterprises. Each leader oversees distinct rare disease portfolios, robust clinical pipelines, and extensive operational experience in developing, manufacturing, and delivering specialized therapies across a wide range of complex conditions. Complementing the industry perspective, Pam Gavin will represent NORD’s independent, cross-disease patient and systems-level viewpoint. Gavin’s participation will bridge the scientific and commercial questions facing rare disease innovation with the diverse, often urgent unmet needs, comprehensive care requirements, and profound access challenges experienced by individuals living with any of the more than 10,000 known rare diseases.
Becky Quick brings decades of distinguished journalism experience covering global business, finance, and markets, alongside a proven track record of interviewing the world’s most influential corporate leaders. Furthermore, Quick approaches the moderated discussion with a deeply personal connection to the rare disease community as a parent of a child living with a rare condition. Her unique combination of professional expertise and lived experience will guide the conversation, uniting distinct perspectives to explore how leaders can maximize the impact of scientific breakthroughs and translate individual successes into widespread progress across the entire rare disease spectrum.
“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, addressing the significance of the upcoming dialogue. “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 16th year, the NORD Rare Disease & Orphan Products Breakthrough Summit serves as a premier annual gathering. The event regularly convenes more than 900 leaders from across the multifaceted rare disease ecosystem to address complex, systemic issues shaping the future of rare disease research, therapeutic development, healthcare policy, clinical care, and patient access. The comprehensive programming spans critical topics, including federal health and regulatory priorities, emerging therapies and advanced technologies, investment strategies, patient partnerships, and the essential systems required to accelerate the journey of breakthroughs from laboratory discovery to patients in need.
Reflecting its status as a major national forum for healthcare policy and innovation, the 2026 Breakthrough Summit will also feature keynote remarks and interactive discussions with prominent senior federal health leaders. Among the distinguished public sector participants 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).
The NORD Breakthrough Summit is intentionally structured around cross-sector collaboration, emphasizing that the complex challenges inherent in rare disease research and commercialization are too vast for any single organization, sector, or institution to solve in isolation. Registration details and the complete event agenda are publicly available through the official summit website at NORDSummit.org.
Founded in 1983, the National Organization for Rare Diseases (NORD®) operates as a leading independent, nonpartisan, 501(c)(3) nonprofit organization dedicated to driving reliable progress in rare disease research, comprehensive patient care, and effective public policy. Working in close partnership with more than 350 disease-specific member patient organizations, NORD works tirelessly to improve the health, well-being, and daily lives of the estimated more than 30 million Americans living with rare diseases. Additional information regarding the organization’s ongoing initiatives, advocacy efforts, and educational resources can be found at rarediseases.org.
