WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Diseases (NORD®) has announced a prominent addition to its upcoming annual event, positioning industry leaders and media voices at the forefront of a crucial national dialogue. CNBC “Squawk Box” co-anchor and “CNBC Cures” host Becky Quick will moderate an exclusive rare disease CEO leadership panel during the upcoming 2026 NORD® Rare Diseases & Orphan Products Breakthrough Summit®.
The high-profile discussion will feature the chief executive officers of BioMarin, Jazz Pharmaceuticals, and Otsuka, who will take the stage alongside NORD CEO Pam Gavin. Scheduled for 11 a.m. ET on Monday, Oct. 26, in Washington, D.C., the panel forms a central pillar of the three-day Summit, which runs from October 25 through October 27. The annual event, now marking its 16th year, serves as a premier gathering point for stakeholders across the rare disease landscape, drawing hundreds of participants dedicated to advancing research, treatment, policy, care, and patient access.
Entitled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” the featured session arrives at a uniquely pivotal crossroads for the rare disease community. Rapid advancements in science, technology, molecular biology, and genetics are unlocking unprecedented possibilities for early diagnosis and targeted intervention. However, industry stakeholders increasingly recognize that scientific discovery alone is insufficient. Realizing the full therapeutic potential of these breakthroughs requires regulatory frameworks, healthcare policies, substantial financial investment, robust healthcare infrastructure, and streamlined treatment delivery mechanisms to keep pace with scientific innovation.
The upcoming conversation will closely examine the leadership strategies, critical corporate decisions, and cross-sector partnerships necessary to capitalize on this current scientific momentum. Panelists are expected to tackle the immense challenge of scale, addressing how the global healthcare and biopharmaceutical sectors can successfully advance and deliver more treatments for a greater number of rare conditions.
The biopharmaceutical CEOs participating in the dialogue represent global enterprises with distinct rare disease portfolios, robust pipelines, and extensive practical experience in developing and delivering therapies across a diverse spectrum of conditions. Their corporate perspectives will be complemented by Pam Gavin, who brings NORD’s independent, cross-disease patient and systemic perspective to the stage. Gavin’s role will bridge the gap between high-level scientific and business strategies and the diverse, often urgent unmet needs, daily care hurdles, and access barriers experienced by individuals living with any of the more than 10,000 known rare diseases.
Becky Quick brings decades of distinguished experience covering global business, finance, and financial markets, alongside a history of interviewing many of the world’s most influential corporate and political leaders. In addition to her professional expertise, Quick brings a deeply personal connection to the rare disease community as a parent of a child living with a rare disease. This dual perspective uniquely positions her to guide a nuanced and impactful conversation, weaving together business acumen, regulatory realities, and human-centric urgency to explore how modern leaders can maximize the promise of technological innovation and translate isolated scientific breakthroughs into broad, systemic 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 16th year, the NORD Rare Disease & Orphan Products Breakthrough Summit has cemented its reputation as a vital forum, bringing together more than 900 leaders from across the multifaceted rare disease ecosystem. Attendees traditionally include patient advocates, researchers, clinicians, biopharmaceutical executives, investors, and policymakers. Together, they address the complex, systemic issues that shape the future of rare disease research, patient care, and market access. Comprehensive programming spans federal health and regulatory priorities, emerging therapies and cutting-edge technologies, investment strategies, patient partnership models, and the critical infrastructure required to move breakthroughs smoothly from the laboratory bench to the patient bedside.
The broader 2026 Breakthrough Summit agenda will also feature key remarks and interactive conversations with senior federal health leaders, highlighting the ongoing partnership and regulatory alignment necessary between government agencies and the private sector. Confirmed federal 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 event’s role as a national nexus for policy discussion and cross-sector collaboration on complex challenges that no single organization, institution, or sector can solve in isolation.
Registration and the complete, up-to-date agenda for the three-day event are available to the public and industry professionals through the official summit 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 driving tangible improvements in the health and daily lives of the more than 30 million Americans living with rare diseases. Working hand-in-hand with a coalition of over 350 disease-specific member patient organizations, NORD serves as a unified voice for the community, driving progress through advocacy, education, research grants, and patient support services. Additional information regarding NORD’s ongoing initiatives, research programs, and advocacy efforts can be found by visiting rarediseases.org.
