WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Disorders (NORD®) has announced a prominent addition to its upcoming annual event: CNBC “Squawk Box” co-anchor and “CNBC Cures” host Becky Quick will moderate a high-level leadership dialogue at the 16th Annual NORD® Rare Diseases & Orphan Products Breakthrough Summit®.
The marquee panel, officially 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, October 26, in Washington, D.C., serving as a central highlight of the three-day Summit running from October 25 to 27.
This year’s dialogue arrives at a pivotal juncture for the rare disease community. Rapid advancements in science, genetics, and technology are continuously expanding the boundaries of what is possible for disease diagnosis and targeted treatment. However, industry stakeholders emphasize that realizing the full potential of these scientific breakthroughs requires concurrent evolution in regulatory frameworks, public policies, private and public investment, healthcare infrastructure, and patient-centered delivery systems.
The panel will convene to examine the critical leadership decisions, strategic investments, and cross-sector partnerships necessary to capitalize on this current wave of innovation. A central theme of the conversation will be addressing the systemic challenge of scale—specifically, how the healthcare ecosystem can efficiently advance and deliver more treatments across a greater number of rare conditions.
The biopharmaceutical executives participating in the dialogue represent global organizations with diverse rare disease portfolios, robust drug development pipelines, and extensive experience navigating the complex journey of bringing therapies from the laboratory bench to the patient bedside. Alongside them, NORD CEO Pam Gavin will inject an independent, cross-disease patient and systems-level perspective into the boardroom discussion. Gavin’s role will bridge the scientific and business questions facing modern rare disease innovation with the diverse, often unmet needs, care complexities, and access hurdles experienced by individuals living with more than 10,000 distinct rare diseases.
Moderator Becky Quick brings decades of distinguished journalism experience covering global business, financial markets, and economic policy, alongside regular interviews with many of the world’s most influential corporate leaders. Beyond 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 blend of macro-level economic insight, journalistic rigor, and personal empathy is expected to guide a nuanced and compelling conversation, uniting these diverse perspectives to explore how industry leaders can maximize the impact of emerging science and translate individual therapeutic 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 in its sixteenth year, the NORD Rare Disease & Orphan Products Breakthrough Summit has established itself as a premier gathering, convening more than 900 leaders from across the entire rare disease ecosystem. Attendees typically include representatives from patient advocacy groups, biotechnology and pharmaceutical companies, federal regulatory agencies, academic research institutions, clinical care providers, and healthcare payers. Together, they address the critical issues shaping the future of rare disease research, treatment development, healthcare policy, patient care, and market access.
The comprehensive programming planned for the 2026 Summit spans a wide array of vital topics, including federal health and regulatory priorities, emerging therapies and cutting-edge technologies, venture and institutional investment, meaningful patient partnership, and the systemic architecture required to safely and efficiently move medical breakthroughs from initial discovery to commercial availability.
Adding to the significance of this year’s event, the 2026 Breakthrough Summit will also feature keynote remarks and interactive conversations with senior federal health leaders. Among the notable government officials scheduled to participate 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 presence underscores the vital intersection between federal regulatory oversight, public biomedical research funding, and private-sector therapeutic innovation.
The NORD Breakthrough Summit is intentionally built around the principle of cross-sector collaboration, acknowledging that the complex scientific, regulatory, and economic challenges facing the rare disease community are far too intricate for any single organization, company, or sector to solve in isolation.
Founded in 1983, the National Organization for Rare Disorders (NORD®) operates as a leading independent, nonpartisan, 501(c)(3) nonprofit organization dedicated to improving the health and lives of the more than 30 million Americans who are estimated to be living with rare diseases. Operating in close partnership with over 350 disease-specific member patient organizations, NORD drives continuous progress in rare disease research, expands access to quality care, and advocates for sensible public policies at both the state and federal levels.
