WASHINGTON, D.C. and NORWELL, Mass. — The National Organization for Rare Diseases (NORD®) has announced a prominent leadership lineup for its upcoming annual event, placing a strong emphasis on translating modern scientific achievements into tangible patient progress. 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 forms a centerpiece of the 16th annual NORD® Rare Diseases & Orphan Products Breakthrough Summit®, scheduled to take place from October 25 through October 27, 2026. Titled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” the session is scheduled for 11 a.m. ET on Monday, October 26, in Washington, D.C.
This year’s leadership dialogue arrives at a pivotal and transformative juncture for the rare disease community. Rapid advancements in science, genetics, and technology are continuously expanding the boundaries of what is possible in medical diagnosis and therapeutic intervention. However, industry stakeholders emphasize that discovery alone is not enough. Realizing the full potential of these breakthroughs requires regulatory frameworks, public policies, strategic investments, healthcare infrastructure, and delivery mechanisms that can keep pace with scientific momentum.
The upcoming conversation will examine the critical leadership decisions, business models, and cross-sector partnerships necessary to capitalize on this historical moment. Crucially, the panel will address the ongoing challenge of scale—exploring how the biopharmaceutical industry and advocacy groups can work in tandem to advance more treatments for a greater number of rare conditions.
The participants in the CEO leadership dialogue bring diverse global perspectives from organizations with robust rare disease portfolios, intricate drug pipelines, and extensive experience navigating the complex pathways of drug development. By pairing these biopharmaceutical executives with NORD’s Pam Gavin, the panel ensures a comprehensive viewpoint that bridges commercial innovation with the independent, cross-disease perspectives of patients. Gavin brings a systems-level view, connecting the business and scientific inquiries of rare disease innovation directly to the diverse unmet needs, care hurdles, and access barriers experienced by individuals living with more than 10,000 distinct rare diseases.
Moderator Becky Quick brings decades of extensive experience covering global business, financial markets, and economic policy, alongside a long-standing career interviewing some of the world’s most influential corporate leaders. In addition to her professional credentials, Quick holds a deeply personal connection to the rare disease community as a parent of a child living with a rare condition. Her dual perspective as a seasoned financial journalist and an affected family member uniquely positions her to guide a nuanced, high-impact conversation. She will weave together corporate strategy and human impact to explore how modern leaders can maximize the promise of innovation and translate individual laboratory successes into broad-based 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. “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 sixteenth year, the NORD Rare Disease & Orphan Products Breakthrough Summit has established itself as a premier gathering, convening more than 900 leaders from across the entire rare disease ecosystem. Attendees typically include representatives from patient advocacy groups, biopharmaceutical companies, academic research institutions, federal agencies, and clinical care providers. Together, they gather to address the critical, systemic issues shaping the future of rare disease research, treatment development, public policy, patient care, and healthcare access.
The comprehensive programming of the three-day summit spans a wide array of crucial topics. Sessions regularly explore federal health and regulatory priorities, emerging therapies and cutting-edge technologies, investment trends, collaborative patient partnerships, and the robust infrastructures needed to successfully move scientific breakthroughs from early discovery laboratories to the patients who depend on them.
The 2026 Breakthrough Summit will also feature keynote remarks, panel participation, and direct conversations with senior federal health leaders who oversee the nation’s regulatory and research apparatuses. Among the confirmed high-level government participants 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 presence underscores the vital intersection between federal regulatory oversight, public biomedical research funding, and private-sector drug development.
The annual NORD Breakthrough Summit is intentionally built around the principle of cross-sector collaboration, acknowledging that the complex, multifaceted challenges facing the rare disease community are simply too large for any single organization, company, or sector to solve in isolation.
Founded in 1983, the National Organization for Rare Disorders (NORD®) is 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 continuous progress in rare disease medical research, clinical care, and public policy.
Registration and further information regarding the event agenda, speaker lineup, and daily schedules for the 2026 NORD Breakthrough Summit remain available through the official event portal at NORDSummit.org.
