WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Disorders (NORD®) has announced that CNBC “Squawk Box” co-anchor and “CNBC Cures” host Becky Quick will moderate a high-profile rare disease CEO leadership dialogue. The session will feature the chief executive officers of BioMarin, Jazz Pharmaceuticals, and Otsuka, alongside NORD CEO Pam Gavin, at the upcoming NORD® Rare Diseases & Orphan Products Breakthrough Summit®.
The panel, titled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” is scheduled for 11 a.m. ET on Monday, October 26, in Washington, D.C. The discussion forms a cornerstone of the three-day Summit, which runs from October 25 to October 27. Industry stakeholders, patient advocates, researchers, and healthcare professionals can view the full agenda and register for the event by visiting NORDSummit.org.
This year’s leadership dialogue arrives at a uniquely pivotal time for the rare disease community. Rapid advancements in science, genetics, and biotechnology are creating unprecedented possibilities for early diagnosis and targeted treatment. However, industry leaders emphasize that realizing the full potential of these scientific breakthroughs requires more than laboratory discovery alone. Policymakers, regulatory frameworks, private investment, healthcare infrastructure, and delivery systems must all keep pace to ensure therapies actually reach the patients who need them.
The upcoming conversation will examine the critical leadership decisions, cross-sector partnerships, and systemic strategies needed to capitalize on this historical moment. Panelists will tackle the profound challenge of scale—specifically, how the biopharmaceutical industry and patient advocacy sectors can accelerate the pace of development to advance more treatments for a greater number of rare diseases.
The biopharmaceutical executives participating in the dialogue bring distinct global perspectives to the stage. Representing major organizations with diverse rare disease portfolios and deep development pipelines, these CEOs possess extensive experience in navigating the complex pathways required to research, manufacture, and deliver specialized therapies across a wide array of conditions.
Balancing this industry viewpoint, Pam Gavin will bring NORD’s independent, cross-disease patient and systems perspective to the discussion. Her participation will help bridge the gap between high-level business and scientific strategies and the diverse, often urgent unmet needs, daily care hurdles, 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 experience covering global business, economics, and financial markets for CNBC, during which she has interviewed many of the world’s most influential corporate leaders. In addition to her professional background, Quick carries a deeply personal connection to the rare disease community as a parent of a child living with a rare condition. Her unique vantage point will enable her to guide the conversation adeptly, weaving together corporate strategy, regulatory realities, and human impact to explore how leaders can successfully translate individual medical breakthroughs into widespread progress.
“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 16th year, the NORD Rare Disease & Orphan Products Breakthrough Summit has established itself as a premier annual gathering. The event brings together more than 900 leaders representing every corner of the rare disease ecosystem to address the complex issues shaping the future of research, treatment development, healthcare policy, patient care, and market access.
The comprehensive programming at the Summit spans critical topics, including federal health and regulatory priorities, emerging therapies and cutting-edge technologies, venture and institutional investment, meaningful patient partnership, and the structural systems required to successfully move medical breakthroughs from initial laboratory discovery to clinical availability.
In addition to the executive leadership dialogue, the 2026 Breakthrough Summit will feature prominent remarks and interactive discussions with senior federal health leaders. Notable speakers scheduled to participate 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 vital intersection between federal oversight, scientific funding, and private sector innovation in addressing rare diseases.
The NORD Breakthrough Summit is intentionally designed around cross-sector collaboration, tackling complex systemic challenges that no single organization, company, or government agency can solve in isolation. By convening diverse stakeholders under one roof, the event fosters dialogue aimed at dismantling barriers to care and innovation.
Founded in 1983, the National Organization for Rare Disorders (NORD®) operates as a leading independent, nonpartisan, nonprofit organization dedicated to improving the health and well-being of the more than 30 million Americans living with rare diseases. Working hand-in-hand with more than 350 disease-specific member patient organizations, NORD drives continuous progress in rare disease research, specialized care, and public policy. Additional information regarding the organization, its initiatives, and the upcoming summit can be found by visiting rarediseases.org.
