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 marquee rare disease CEO leadership dialogue at the upcoming NORD® Rare Diseases & Orphan Products Breakthrough Summit®.
The high-profile panel will bring together the chief executive officers of BioMarin, Jazz Pharmaceuticals, and Otsuka, alongside NORD CEO Pam Gavin. Scheduled for 11 a.m. ET on Monday, October 26, in Washington, D.C., the discussion forms a centerpiece of the three-day summit taking place from October 25 to 27. The annual event continues to serve as a vital gathering point for stakeholders across the healthcare, regulatory, and patient advocacy sectors.
Entitled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” the session arrives at a genuinely pivotal moment for the rare disease community. Rapid scientific and technological advancements are continually unlocking new possibilities for early diagnosis and targeted treatment. However, realizing the full clinical and societal potential of these breakthroughs will require corresponding evolution across regulatory frameworks, public and private policies, capital investment, healthcare infrastructure, and delivery mechanisms.
The conversation is designed to examine the high-level leadership decisions, corporate strategies, and cross-sector partnerships needed to capitalize on this current moment of scientific promise. In particular, the panel will confront the enduring challenge of scale—specifically, how the ecosystem can successfully accelerate the translation of research into accessible treatments for a greater number of rare conditions.
The leaders participating in the dialogue represent global biopharmaceutical enterprises boasting diverse rare disease portfolios, extensive drug development pipelines, and deep experience navigating complex regulatory and commercial pathways. Alongside these industry leaders, Pam Gavin will bring NORD’s independent, cross-disease patient and systems perspective. Her participation will help bridge the gap between high-level scientific and business strategies and the diverse, often unmet needs, daily care hurdles, and acute access challenges experienced by individuals living with any of the more than 10,000 known rare diseases.
Moderator Becky Quick brings decades of distinguished experience covering global business, economics, and financial markets, alongside a reputation for conducting rigorous interviews with the world’s most influential executives. Furthermore, Quick possesses a deeply personal connection to the rare disease community as the parent of a child living with a rare condition. This unique combination of professional expertise and lived experience will allow her to guide a nuanced, multifaceted conversation. She will weave together the distinct perspectives of the panel to explore how leaders can maximize the impact of modern scientific innovation and turn isolated breakthroughs into broad, systemic 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, emphasizing 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 forum, drawing more than 900 leaders from every corner of the rare disease ecosystem. Attendees typically include representatives from patient advocacy organizations, pharmaceutical and biotechnology companies, academic research institutions, and federal regulatory agencies. Together, they gather to address the critical issues shaping the future of rare disease research, therapeutic development, healthcare policy, patient care, and market access.
The comprehensive programming of the summit spans a wide array of topics, including federal health and regulatory priorities, emerging therapies and cutting-edge technologies, venture and institutional investment, genuine patient partnership, and the infrastructural systems required to successfully move breakthroughs from the laboratory bench to the patient bedside.
Adding significant weight to the 2026 event, the Breakthrough Summit will also feature high-level remarks and collaborative conversations with senior federal health leaders. Among the prominent government officials slated to speak 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 essential partnership required between federal oversight agencies, researchers, and industry leaders to address the complex challenges inherent in rare disease therapeutic development.
The NORD Breakthrough Summit is intentionally built around the principle of cross-sector collaboration, tackling complex systemic challenges that no single organization, company, or government agency can solve in isolation. Registration details, ongoing updates, and the full multi-day agenda are available 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 improving the health and well-being 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 research, elevates the standard of care, and shapes influential public policy.
