WASHINGTON, D.C. and NORWELL, Mass. — In an era defined by unprecedented scientific breakthroughs, the ultimate measure of progress in the rare disease community is no longer just discovery—it is delivery. Addressing this critical juncture, 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 at the upcoming NORD® Rare Diseases & Orphan Products Breakthrough Summit®.
The landmark 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 Chief Executive Officer Pam Gavin. Scheduled for 11 a.m. ET on Monday, Oct. 26, the discussion forms a cornerstone of the three-day Summit taking place in Washington, D.C., from October 25 to October 27.
Now entering its 16th year, the NORD Breakthrough Summit has established itself as the premier annual gathering for the rare disease ecosystem, drawing more than 900 leaders spanning biopharmaceuticals, patient advocacy, federal health agencies, academia, and investment. This year’s event arrives at a pivotal and complex time for the community. While extraordinary advancements in science and technology are rapidly expanding the boundaries of what is possible in diagnostics and therapeutic intervention, realizing the full, tangible potential of these innovations remains a formidable challenge.
According to conference organizers, translating laboratory breakthroughs into accessible patient care requires a synchronized effort across the entire healthcare landscape. Regulatory frameworks, public policies, private investment, robust healthcare infrastructure, and efficient treatment delivery systems must all evolve to keep pace with scientific momentum. The upcoming CEO dialogue will directly examine the leadership decisions, strategic investments, and cross-sector partnerships necessary to capitalize on this historical moment. Crucially, the panel will address the ongoing challenge of scale—exploring how the industry can successfully advance and deliver more treatments for a greater number of rare conditions.
The leaders participating in the session bring a wealth of diverse perspectives from global biopharmaceutical enterprises. Representing organizations with extensive rare disease portfolios, robust pipelines, and deep operational experience, these executives navigate the complex realities of developing therapies across a wide spectrum of rare disorders. Pam Gavin will round out the executive panel by bringing NORD’s independent, cross-disease patient and systems perspective. By bridging the gap between high-level business and scientific strategies and the daily realities faced by patients, Gavin’s viewpoint underscores the diverse unmet needs, care hurdles, and access barriers experienced by individuals living with any of the more than 10,000 known rare diseases.
Moderator Becky Quick brings a dual perspective to the stage, combining decades of high-level journalism covering global business, economics, and markets with a deeply personal connection to the rare disease community as the parent of a child living with a rare condition. Throughout her career, Quick has interviewed many of the world’s most influential corporate leaders and policy architects. At the Summit, she will leverage this extensive interviewing experience to guide a nuanced conversation among the panelists, exploring how industry leaders can maximize the impact of technological innovation and translate individual corporate breakthroughs into widespread progress for the broader rare disease population.
"We are at an important moment for rare disease," said Pam Gavin, CEO of NORD, addressing the significance of the upcoming dialogue. "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. 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 comprehensive three-day programming of the 2026 Breakthrough Summit is designed to tackle the multifaceted issues shaping the future of rare disease research, treatment paradigms, regulatory policy, and patient care access. Sessions throughout the event will dive deeply into federal health and regulatory priorities, emerging therapies and cutting-edge technologies, investment trends, collaborative patient partnerships, and the structural systems required to seamlessly transition scientific breakthroughs from initial discovery to clinical availability.
In addition to the CEO leadership dialogue, the 2026 Breakthrough Summit will feature prominent remarks and interactive conversations with senior federal health leaders who play a critical role in shaping the regulatory and research environment. Confirmed speakers 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 collaborative nature of the Summit, which is deliberately built around cross-sector engagement to confront complex challenges that no single organization, institution, or sector can solve in isolation.
The National Organization for Rare Disorders, founded in 1983, operates as a leading independent, nonpartisan, and nonprofit organization dedicated to improving the health, well-being, and overall quality of life for the more than 30 million Americans who are living with rare diseases. Working in active partnership with over 350 disease-specific member patient organizations, NORD drives continuous progress across rare disease research, clinical care, and federal policy advocacy.
Registration for the 2026 NORD Rare Diseases & Orphan Products Breakthrough Summit, along with the complete event agenda detailing sessions and speakers, is available online at NORDSummit.org.
