WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Diseases (NORD®) has announced a major leadership session for its upcoming annual event, bringing together some of the most influential voices in biopharmaceuticals and patient advocacy. 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 the chief executive officers of BioMarin, Jazz Pharmaceuticals, and Otsuka, alongside NORD CEO Pam Gavin.
The high-profile panel, titled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” is scheduled for 11 a.m. ET on Monday, Oct. 26, in Washington, D.C. The discussion forms a cornerstone of the three-day NORD® Rare Diseases & Orphan Products Breakthrough Summit®, which runs from Oct. 25 through Oct. 27. Industry professionals, researchers, clinicians, and patient advocates are gathering at the summit to address the most pressing challenges and opportunities facing the rare disease community.
This year’s dialogue arrives at a pivotal and transformative juncture for the rare disease sector. Unprecedented scientific discoveries and rapid technological advancements are continually unlocking new possibilities for earlier, more precise diagnoses and more targeted, life-changing treatments. However, industry leaders emphasize that scientific discovery alone is insufficient. Realizing the full therapeutic potential of these innovations requires that regulatory frameworks, public policies, private and public investment, healthcare infrastructure, and treatment delivery systems all keep pace with scientific progress.
The upcoming panel will closely examine the executive leadership, strategic decisions, and cross-sector partnerships necessary to capitalize on this unique historical moment. A central theme of the discussion will be addressing the systemic challenge of scale—specifically, how the healthcare and biopharmaceutical ecosystems can successfully advance and deliver more treatments across a rapidly growing universe of rare conditions.
The participating biopharmaceutical CEOs bring diverse perspectives from global companies that maintain distinct rare disease portfolios, robust pipelines, and extensive experience in researching, developing, and commercializing treatments across a wide array of conditions. Paired with these industry insights, Pam Gavin will bring NORD’s independent, cross-disease patient and systems-level perspective. Her contribution will connect the high-level scientific and business questions facing modern rare disease innovation directly with the diverse, often unmet needs, daily care hurdles, and profound access challenges experienced by people living with more than 10,000 known rare diseases.
Becky Quick brings decades of distinguished experience covering global business, economics, and financial markets, alongside a reputation for conducting rigorous interviews with the world’s most influential corporate leaders. In addition to her extensive journalistic background, Quick holds 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 guide the conversation, bridging the gap between corporate strategy and human impact to explore how leaders can maximize the promise of scientific innovation and translate individual laboratory breakthroughs into widespread, sustainable progress for patients everywhere.
“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.”
Now celebrating its 16th year, the NORD Rare Disease & Orphan Products Breakthrough Summit has established itself as a premier gathering space for the community. The event traditionally brings together more than 900 leaders from across the entire rare disease ecosystem, including representatives from patient advocacy groups, biopharmaceutical companies, academic research institutions, and regulatory bodies. Together, attendees work to address critical issues shaping the future of rare disease research, innovative treatments, public policy, patient care, and healthcare access.
The comprehensive programming of the Breakthrough Summit spans a wide range of vital topics, including federal health and regulatory priorities, emerging therapies and cutting-edge technologies, investment trends, meaningful patient partnerships, and the complex structural systems required to successfully move breakthroughs from the research bench to the patient bedside.
Adding to the significance of the 2026 event, the Breakthrough Summit will also feature prominent remarks and interactive conversations with senior federal health leaders. Among the key governmental figures 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 involvement underscores the critical importance of public-private dialogue and regulatory alignment in advancing rare disease therapeutics.
The annual NORD Breakthrough Summit is intentionally built around the principle of cross-sector collaboration, tackling complex systemic challenges that no single organization, company, or sector could possibly solve in isolation. Registration details and the full conference agenda remain available to the public through the official event website at NORDSummit.org.
Founded in 1983, the National Organization for Rare Disorders (NORD®) operates as a leading independent, nonpartisan, 501(c)(3) nonprofit organization dedicated to dramatically improving the health and lives of the more than 30 million Americans who are estimated to be living with rare diseases. Working in active partnership with over 350 disease-specific member patient organizations, NORD drives continuous progress in rare disease medical research, patient advocacy, and healthcare policy. Additional information regarding the organization’s ongoing initiatives and resources can be found by visiting rarediseases.org.
