WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Disorders (NORD®) announced today that CNBC “Squawk Box” co-anchor and “CNBC Cures” host Becky Quick will moderate a high-profile rare disease CEO leadership dialogue at the upcoming NORD® Rare Diseases & Orphan Products Breakthrough Summit®.
The panel, titled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” will feature 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, Oct. 26, in Washington, D.C., anchoring the middle day of the premier three-day industry event taking place from October 25 through October 27, 2026.
This year’s leadership dialogue arrives at a pivotal and defining juncture for the rare disease community. Rapid advancements in science, biotechnology, and genomic medicine are continually unlocking unprecedented possibilities for earlier diagnoses and more targeted treatments. However, industry stakeholders emphasize that scientific discovery is only the first step. Realizing the full potential of these breakthroughs will require regulatory frameworks, forward-thinking policies, robust financial investment, modernized healthcare infrastructure, and streamlined treatment delivery mechanisms to keep pace with innovation.
The upcoming panel will examine the critical leadership decisions, strategic pivots, and cross-sector partnerships needed to capitalize on this historical moment. Furthermore, the discussion will address the persistent challenge of scale—specifically, how the biopharmaceutical industry and advocacy groups can successfully advance and deliver more treatments across a greater number of rare conditions.
The distinguished panel brings together leaders from global biopharmaceutical enterprises with diverse rare disease portfolios, extensive development pipelines, and deep experience in navigating complex regulatory and commercial landscapes. Alongside these corporate leaders, NORD CEO Pam Gavin will provide an independent, cross-disease patient and systems perspective. Her participation will ground the scientific and business questions facing modern rare disease innovation in the diverse, and often unmet, daily needs, care coordination hurdles, and access challenges 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 tenure interviewing many of the world’s most influential corporate and political leaders. In addition to her professional expertise, Quick brings a profound personal connection to the rare disease community as a parent of a child living with a rare disease. This unique blend of journalistic rigor, economic insight, and personal dedication will shape how she guides the conversation, connecting industry leaders with the lived experiences of patients to explore how to successfully translate individual scientific breakthroughs into widespread public health progress.
Reflecting on the timing and significance of the upcoming dialogue, Pam Gavin emphasized the urgency of collective action across the 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,” 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 gathering place for the rare disease community. The annual event brings together more than 900 leaders from across the entire rare disease ecosystem, including patient advocates, researchers, biopharmaceutical executives, regulators, payers, and clinical experts. Together, attendees work to address the most critical issues shaping the future of rare disease research, therapeutic development, healthcare policy, patient care, and market access.
Comprehensive programming at the three-day summit spans a wide array of vital topics, ranging from federal health priorities and evolving regulatory guidelines to emerging therapies, cutting-edge technologies, sustainable investment strategies, and deep patient partnerships. The overarching goal remains focused on strengthening the complex systems required to efficiently move medical breakthroughs from initial laboratory discovery to the patients who depend on them.
In addition to the executive leadership dialogue, the 2026 Breakthrough Summit will feature prominent remarks and interactive conversations with senior federal health leaders. Among the key government speakers confirmed for the event are 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.
The NORD Breakthrough Summit is intentionally built around the principle of cross-sector collaboration, tackling complex systemic challenges that no single organization, company, or government agency can solve in isolation. Complete details regarding event registration, lodging, and the full multi-day agenda are available publicly through the official summit website at NORDSummit.org.
Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent, nonpartisan, 501(c)(3) nonprofit organization dedicated to identifying, treating, and curing rare disorders through education, advocacy, research, and patient services. NORD represents more than 30 million Americans living with rare diseases, working tirelessly alongside a coalition of more than 350 disease-specific member patient organizations to drive meaningful progress in rare disease research, care, and public policy.
For further information regarding the upcoming 2026 Breakthrough Summit or NORD’s ongoing advocacy initiatives, members of the media may contact Cheryl Herbert, Vice President of Marketing and Communications, at [email protected].
