WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Diseases (NORD®) has announced a high-profile leadership dialogue for its upcoming annual event, bringing together top executives from the biopharmaceutical sector to address the intricate challenges of turning scientific discoveries into accessible patient treatments. CNBC “Squawk Box” co-anchor and “CNBC Cures” host Becky Quick will moderate the panel, titled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” featuring the chief executive officers of BioMarin, Jazz Pharmaceuticals, and Otsuka, alongside NORD CEO Pam Gavin.
The discussion is scheduled for 11 a.m. ET on Monday, October 26, in Washington, D.C., anchoring the second day of the three-day NORD® Rare Diseases & Orphan Products Breakthrough Summit®, which runs from October 25 to October 27. Now in its 16th year, the summit serves as a premier gathering for the rare disease community, regularly drawing more than 900 leaders from across the healthcare, academic, regulatory, and patient advocacy ecosystems to collaborate on critical issues shaping the future of research, treatment development, policy, and healthcare access.
The upcoming CEO dialogue arrives at a pivotal and transformative juncture for the rare disease sector. Over the past decade, unprecedented strides in basic science, genomic sequencing, and technological innovation have unlocked remarkable possibilities for the diagnosis and treatment of conditions that were once considered entirely intractable. However, industry stakeholders increasingly recognize that scientific discovery represents only the first hurdle in a complex journey. Realizing the full potential of these breakthroughs will require regulatory frameworks, public and private policies, capital investment, healthcare infrastructure, and treatment delivery mechanisms to evolve and keep pace.
The conversation will delve into the leadership decisions, strategic investments, and cross-sector partnerships necessary to capitalize on this current moment of scientific momentum. Specifically, the panel will confront the overarching challenge of scale—how the biopharmaceutical industry and healthcare systems can successfully advance and deliver more treatments for a greater number of rare diseases without leaving patient communities behind.
The panel brings together executives managing global portfolios with diverse therapeutic pipelines and extensive experience in developing and delivering specialized medicines. Alongside these industry leaders, NORD CEO Pam Gavin will provide an independent, cross-disease patient and systems perspective. Gavin’s participation is designed to bridge the gap between the high-level scientific and business questions facing commercial innovators and the diverse, often urgent unmet needs, daily care hurdles, and access barriers experienced by individuals living with any of the more than 10,000 known rare diseases.
Becky Quick brings decades of distinguished experience covering global business, financial markets, and economic policy, as well as conducting high-level interviews with many of the world’s most influential corporate leaders. Beyond her professional reporting credentials, Quick also brings a deeply personal connection to the rare disease community as the parent of a child living with a rare condition. This dual perspective uniquely positions her to guide a nuanced dialogue, helping to connect macroeconomic and commercial realities with the human element of therapeutic development and patient access. By synthesizing these viewpoints, the session aims to explore how modern leadership can maximize the promise of technological innovation and translate individual laboratory breakthroughs into widespread, sustainable progress across the broader rare disease landscape.
Highlighting the urgency of the moment, Pam Gavin emphasized that the intersection of modern science and patient care demands proactive collaboration across the entire healthcare ecosystem.
“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,” Gavin said. “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.”
The broader agenda for the 2026 Breakthrough Summit reflects this collaborative ethos, featuring comprehensive programming dedicated to federal health and regulatory priorities, emerging therapies and next-generation technologies, investment trends, patient partnership models, and the structural systems required to seamlessly move medical breakthroughs from initial laboratory discovery to clinical application and patient hands.
In addition to the CEO leadership panel, the summit’s roster of speakers includes senior federal health leaders who play a vital role in shaping the regulatory and research landscape. Confirmed participants include Kyle Diamantas, J.D., Acting Commissioner of the U.S. Food and Drug Administration (FDA), and Jay Bhattacharya, M.D., Ph.D., Director of the National Institutes of Health (NIH). Their participation underscores the critical partnership required between federal agencies, academic researchers, private industry, and patient advocacy groups to address complex health challenges that no single organization or sector can solve in isolation.
Founded in 1983, the National Organization for Rare Diseases operates as a leading independent, nonpartisan, 501(c)(3) nonprofit organization dedicated to identifying, treating, and curing rare disorders through education, advocacy, research, and patient services. Representing the interests of over 30 million Americans living with rare diseases, NORD works in close partnership with more than 350 disease-specific member patient organizations to drive systemic progress.
Registration and further details regarding the event agenda, speaker biographies, and session schedules for the 2026 NORD Rare Diseases & Orphan Products Breakthrough Summit are available through the official event website at NORDSummit.org.
