WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Disorders (NORD®) has announced that Becky Quick, co-anchor of CNBC’s “Squawk Box” and host of “CNBC Cures,” will moderate a prominent rare disease CEO leadership dialogue. The session will feature the chief executive officers of BioMarin, Jazz Pharmaceuticals, and Otsuka, alongside NORD CEO Pam Gavin, during the upcoming NORD® Rare Diseases & Orphan Products Breakthrough Summit.
The panel, titled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” is scheduled for 11 a.m. ET on Monday, October 26, in Washington, D.C. The session forms a centerpiece of the three-day Summit, which runs from October 25 to October 27. Registration details and the complete event agenda are publicly available through the official summit website at NORDSummit.org.
This high-profile leadership conversation arrives at a crucial juncture for the rare disease community. Rapid advancements in science and technology are continuously unlocking unprecedented possibilities for accurate diagnoses and targeted treatments. However, industry stakeholders emphasize that discovering new science is only the first step. Realizing the full potential of these breakthroughs will require regulatory frameworks, health policies, targeted investments, robust healthcare infrastructure, and efficient treatment delivery systems to evolve and keep pace.
The upcoming panel will examine the critical leadership decisions, strategic investments, and cross-sector partnerships needed to capitalize on this moment. In particular, the dialogue will address the complex challenge of scale—specifically, how the ecosystem can successfully advance and deliver more treatments for a greater number of rare diseases.
The executive participants in the CEO leadership dialogue bring diverse global perspectives from major biopharmaceutical companies with extensive rare disease portfolios and deep pipelines. These organizations possess significant experience in discovering, developing, and delivering specialized therapies across a wide range of complex conditions. Joining them, Pam Gavin will bring NORD’s independent, cross-disease patient and systems perspective. Her contributions will connect the high-level scientific and business questions facing modern rare disease innovation with the diverse unmet needs, daily care hurdles, and profound access challenges experienced by individuals living with more than 10,000 distinct rare diseases.
Moderator Becky Quick brings decades of distinguished experience covering global business, economics, and financial markets, alongside a history of interviewing some of the world’s most influential corporate leaders. In addition to her extensive journalistic background, Quick brings a deeply personal connection to the rare disease community as the parent of a child living with a rare condition. Drawing from both her professional expertise and personal insights, she will guide the conversation to explore how industry leaders can maximize the power of scientific and technological innovation to translate isolated breakthroughs into widespread progress across the entire rare disease landscape.
“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 of the upcoming discussion. “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 for the community. The event traditionally brings together more than 900 leaders from across the rare disease ecosystem to address critical issues shaping the future of research, treatment development, healthcare policy, patient care, and access. The comprehensive programming spans federal health and regulatory priorities, emerging therapies and cutting-edge technologies, financial investment strategies, patient partnership models, and the essential systems required to move breakthroughs smoothly from the laboratory discovery phase directly to patients.
The 2026 Breakthrough Summit will also feature prominent 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 participation underscores the vital importance of public-private dialogue and regulatory alignment in addressing the unique challenges of orphan product development.
The NORD Breakthrough Summit is intentionally built around cross-sector collaboration, tackling complex systemic challenges that no single organization, company, or sector can solve in isolation. By bringing together patient advocates, biopharmaceutical leaders, academic researchers, and federal regulators, the summit fosters an environment dedicated to actionable solutions.
Founded in 1983, the National Organization for Rare Disorders (NORD®) operates as a leading independent, nonpartisan, 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 drives vital progress in rare disease research, patient advocacy, care standards, and public policy. Additional information regarding the organization, its initiatives, and the upcoming summit can be found at rarediseases.org.
