BioMarin, Jazz Pharmaceuticals, and Otsuka CEOs to Join NORD CEO to Examine What it Takes to Turn Scientific Advancements into Patient Progress

WASHINGTON, Oct. 6, 2026 /PRNewswire/ — The National Organization for Rare Disorders (NORD®) today announced that CNBC “Squawk Box” co-anchor and “CNBC Cures” host Becky Quick will moderate a rare disease CEO leadership dialogue featuring the CEOs of BioMarin, Jazz Pharmaceuticals and Otsuka alongside NORD CEO Pam Gavin at the NORD® Rare Diseases & Orphan Products Breakthrough Summit®. The panel will take place at 11 a.m. ET on Monday, October 26, in Washington, D.C., during the three-day Summit, October 25–27. Register and see the full agenda at NORDSummit.org.

Moderated by Quick, “Next Decade of Rare Disease: A CEO Leadership Dialogue” comes at a pivotal time for rare disease. Scientific and technological advances are creating new possibilities for diagnosis and treatment, but realizing their full potential will require regulatory frameworks, policies, investment, healthcare infrastructure and treatment delivery to keep pace. The conversation will examine the leadership, decisions and partnerships needed to capitalize on this moment and address the challenge of scale — advancing more treatments for more rare diseases.

Participants in the CEO leadership dialogue include:

• Becky Quick, co-anchor, CNBC Squawk Box and host, CNBC Cures, Moderator
• Alexander Hardy, President and CEO, BioMarin
• Renee Gala, President and CEO, Jazz Pharmaceuticals
• Tarek Rabah, President and CEO, Otsuka North America Pharmaceutical
• Pam Gavin, CEO, NORD

The three biopharmaceutical CEOs bring perspectives from global companies with distinct rare disease portfolios, pipelines and experience developing and delivering treatments across a range of rare diseases. Gavin will bring NORD’s independent, cross-disease patient and systems perspective, connecting the scientific and business questions facing rare disease innovation with the diverse unmet needs, care and access challenges experienced by people across more than 10,000 rare diseases.

Quick brings decades of experience covering business and markets and interviewing some of the world’s most influential business leaders, along with a personal connection to rare disease as a parent of a child living with a rare disease. She will guide the conversation, bringing together these perspectives to explore how leaders can maximize the potential of scientific and technological innovation and translate individual breakthroughs into progress across more rare diseases.

“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 16^th year, the NORD Rare Disease & Orphan Products Breakthrough Summit brings together more than 900 leaders from across the rare disease ecosystem to address critical issues shaping the future of rare disease research, treatment, policy, care and access. Programming spans federal health and regulatory priorities, emerging therapies and technologies, investment, patient partnership and the systems needed to move breakthroughs from discovery to patients.

The 2026 Breakthrough Summit will also feature remarks and conversations with senior federal health leaders, including Kyle Diamantas, J.D., Acting Commissioner of the U.S. Food and Drugs Administration (FDA), and Jay Bhattacharya, M.D., Ph.D., Director of the National Institutes of Health (NIH).

The NORD Breakthrough Summit is built around cross-sector collaboration on complex challenges that no single organization or sector can solve alone. Register and view the full agenda at: NORDSummit.org.

About the National Organization for Rare Disorders (NORD^®)
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 over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. Learn more at rarediseases.org.

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SOURCE National Organization for Rare Disorders (NORD®)