WASHINGTON, D.C. and NORWELL, Mass. — As scientific innovation continues to unlock unprecedented possibilities in the medical field, turning those laboratory breakthroughs into tangible patient progress remains one of healthcare’s most pressing challenges. To address this critical juncture, the National Organization for Rare Disorders (NORD®) has announced a high-profile leadership panel for its upcoming annual event. Becky Quick, co-anchor of CNBC’s “Squawk Box” and host of “CNBC Cures,” is set to moderate a rare disease CEO leadership dialogue featuring top executives from BioMarin, Jazz Pharmaceuticals, and Otsuka, alongside NORD CEO Pam Gavin.
The highly anticipated panel, titled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” will take place at 11 a.m. ET on Monday, October 26, in Washington, D.C. The session forms a centerpiece of the three-day NORD® Rare Diseases & Orphan Products Breakthrough Summit®, scheduled for October 25 through 27. Now in its 16th year, the summit brings together more than 900 leaders from across the global rare disease ecosystem to tackle the complex issues shaping the future of research, treatment development, healthcare policy, and patient access.
This year’s dialogue arrives at a pivotal moment for the rare disease community. Rapid advancements in genetic science, cellular therapies, and digital health technologies are creating extraordinary opportunities for earlier diagnoses and targeted treatments. However, stakeholders across the board emphasize that scientific discovery alone is insufficient. Realizing the full potential of these innovations requires regulatory frameworks, public and private investment, healthcare infrastructure, and treatment delivery systems to evolve and keep pace with the sheer velocity of scientific progress.
The upcoming panel will examine the strategic leadership, pivotal decisions, and cross-sector partnerships necessary to capitalize on this current scientific momentum. Specifically, the discussion will confront the overarching challenge of scale—exploring how the biopharmaceutical industry and healthcare systems can advance more treatments for a greater number of rare conditions efficiently and equitably.
The participant lineup features top executives steering companies with diverse global portfolios, expansive pipelines, and extensive experience in developing and delivering therapies across a wide spectrum of rare disorders. These corporate perspectives will be complemented by Pam Gavin, who brings NORD’s independent, cross-disease patient and systems perspective to the stage. Gavin’s role will center on connecting the scientific and business imperatives of rare disease innovation with the diverse, unmet needs, care complexities, and access hurdles experienced by individuals living with any of the more than 10,000 known rare diseases.
Moderator Becky Quick brings decades of distinguished experience covering global business, economics, and financial markets, alongside her reputation for interviewing many of the world’s most influential corporate leaders. Beyond her professional expertise, Quick holds a personal connection to the rare disease community as a parent of a child living with a rare condition. Her unique blend of journalistic rigor, economic insight, and personal advocacy will guide the conversation, helping to synthesize diverse viewpoints and explore how leaders can translate individual scientific breakthroughs into widespread, systemic 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, highlighting the urgency behind 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.”
The broader agenda for the 2026 Breakthrough Summit spans a wide array of critical topics, including federal health and regulatory priorities, emerging therapies and cutting-edge technologies, venture investment, patient partnership, and the systemic architecture required to move medical breakthroughs seamlessly from initial discovery to the patient bedside.
Adding significant weight to the policy discussions at this year’s summit, the event will also feature prominent remarks and interactive conversations with senior federal health leaders. Among them 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 summit, reinforcing the premise that overcoming the multifaceted challenges of rare disease management requires active, ongoing engagement between regulators, researchers, industry leaders, and patient advocacy groups.
The NORD Breakthrough Summit is intentionally designed around cross-sector collaboration, operating on the principle that the complex obstacles facing the rare disease community are too vast for any single organization or sector to solve in isolation. By convening voices from biopharmaceuticals, federal regulatory agencies, academic research institutions, and patient communities, the summit aims to foster actionable solutions and drive long-term systemic improvement.
Founded in 1983, the National Organization for Rare Disorders (NORD®) serves as a leading independent, nonpartisan, and nonprofit organization dedicated to improving the health and lives of the more than 30 million Americans living with rare diseases. Working in active partnership with over 350 disease-specific member patient organizations, NORD continues to drive meaningful progress in rare disease research, comprehensive patient care, and public policy.
Registration and further details regarding the full agenda for the 2026 Breakthrough Summit are available through the official event website at NORDSummit.org.
