WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Diseases (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®.
Quick will be joined on stage by the chief executive officers of BioMarin, Jazz Pharmaceuticals, and Otsuka, alongside NORD CEO Pam Gavin. Entitled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” the panel is scheduled for 11 a.m. ET on Monday, Oct. 26, in Washington, D.C. The discussion forms a core component of NORD’s flagship three-day event, which runs from Oct. 25 through Oct. 27.
The upcoming leadership dialogue arrives at a uniquely pivotal and transformative moment for the global rare disease community. Rapid advancements in science, genetics, and pharmaceutical technology are continuously unlocking unprecedented possibilities for earlier diagnoses and more targeted, life-altering treatments. However, industry stakeholders emphasize that scientific discovery alone is insufficient. Realizing the full, practical potential of these medical innovations will require modern regulatory frameworks, forward-thinking public policies, sustained financial investment, robust healthcare infrastructure, and efficient treatment delivery pathways that can keep pace with laboratory breakthroughs.
The panel discussion will closely examine the critical leadership decisions, strategic investments, and cross-sector partnerships necessary to capitalize on this current era of medical science. Furthermore, the participants will address the ongoing challenge of scale—specifically, how the biopharmaceutical industry and patient advocacy sectors can work together to advance more treatments across a greater number of rare conditions.
The biopharmaceutical CEOs participating in the dialogue bring diverse perspectives from global enterprises that manage extensive rare disease portfolios and expansive clinical pipelines. These leaders possess deep, hands-on experience in navigating the complex life cycle of discovering, developing, and successfully commercializing therapies for a wide spectrum of rare conditions.
Meanwhile, Pam Gavin will contribute NORD’s independent, cross-disease patient and systemic perspective to the conversation. Gavin’s role will bridge the gap between high-level scientific and business questions and the lived experiences of patients. She will highlight the diverse, often unmet needs, care hurdles, and access barriers experienced by individuals and families navigating more than 10,000 distinct rare diseases.
Becky Quick brings decades of distinguished experience covering global business, financial markets, and macroeconomic trends to the moderated session. Known for interviewing many of the world’s most influential corporate leaders, Quick also brings a profound personal connection to the rare disease community as a parent of a child living with a rare condition. Her dual perspective as an elite financial journalist and a rare disease parent uniquely positions her to guide a nuanced conversation on how leaders can maximize the impact of technological innovation and translate individual laboratory breakthroughs into widespread clinical 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, reflecting on the urgency of 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 annual gathering for the rare disease sector. The event traditionally brings together more than 900 leaders, innovators, clinicians, regulators, and patient advocates from across the healthcare ecosystem to confront the most pressing issues shaping the future of rare disease research, treatment development, public policy, patient care, and market access.
The extensive summit programming spans a broad array of critical topics, including federal health and regulatory priorities, emerging therapeutic modalities and technologies, venture investment and capital allocation, meaningful patient partnership, and the systemic reforms required to efficiently move breakthroughs from the research bench to the patient bedside.
In addition to the CEO leadership dialogue, the 2026 Breakthrough Summit will feature prominent remarks, keynote addresses, and interactive conversations with senior federal health leaders. Among the confirmed high-ranking government participants are Kyle Diamantas, J.D., Acting Commissioner of the U.S. Food and Drug Administration (FDA), and Dr. Jay Bhattacharya, M.D., Ph.D., Director of the National Institutes of Health (NIH). Their participation underscores the collaborative nature of the summit, highlighting the vital dialogue required between regulatory agencies, academic researchers, federal funding bodies, and private industry.
The NORD Breakthrough Summit is intentionally built around the principle of cross-sector collaboration, tackling complex systemic challenges that no single organization, pharmaceutical company, or advocacy group can solve in isolation. Complete registration details, ticketing information, and the full multi-day event agenda are available to the public 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 in active partnership with over 350 disease-specific member patient organizations to drive meaningful progress in research, care, and public policy.
