The National Organization for Rare Disorders (NORD®) will bring pharmaceutical executives and its chief executive together for a leadership dialogue on rare disease at the NORD® Rare Diseases & Orphan Products Breakthrough Summit®. CNBC’s Becky Quick will moderate the panel at 11 a.m. ET on Monday, October 26, in Washington, D.C.
The three-day Summit runs October 25–27. The discussion, titled “Next Decade of Rare Disease: A CEO Leadership Dialogue,” will examine what leaders may need to turn scientific advances into progress for patients. NORD’s announcement says the conversation will address leadership, decisions and partnerships needed to advance more treatments for more rare diseases.
Executives Bring Different Rare Disease Perspectives
Panel participants include Alexander Hardy, president and CEO of BioMarin; Renee Gala, president and CEO of Jazz Pharmaceuticals; Tarek Rabah, president and CEO of Otsuka North America Pharmaceutical; and NORD CEO Pam Gavin. Quick, co-anchor of CNBC’s “Squawk Box” and host of “CNBC Cures,” will moderate.
NORD said 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 contribute what the organization described as an independent, cross-disease patient and systems perspective.
That perspective connects scientific and business questions with needs and challenges experienced by people across more than 10,000 rare diseases, NORD said. The organization identified unmet needs, care and access as issues the panel will consider.
Discussion Focuses on Turning Advances Into Access
The announcement says scientific and technological advances are creating new possibilities for diagnosis and treatment. It also says regulatory frameworks, policies, investment, healthcare infrastructure and treatment delivery will need to keep pace for those possibilities to reach patients.
The panel is expected to examine how leaders can capitalize on this moment and address the challenge of scale: advancing more treatments for more rare diseases. Quick brings decades of business and markets coverage and interviews with business leaders, according to NORD. The organization also noted her personal connection to rare disease as a parent of a child living with a rare disease.
Gavin said science is opening doors but discovery alone does not ensure advances reach the people who need them. She said leadership across the rare disease ecosystem will be needed to remove barriers, keep pace with innovation and translate progress into better outcomes.
The planned conversation puts executive leadership alongside patient and systems concerns. Readers interested in how organizations approach leadership decisions can also read about three leadership transitions and the succession questions raised by CEO departures.
Summit Includes Federal Health Leaders
Now in its 16th year, the Summit brings together more than 900 leaders from across the rare disease ecosystem, according to NORD. Its programming covers federal health and regulatory priorities, emerging therapies and technologies, investment, patient partnership, and systems intended to move breakthroughs from discovery to patients.
The 2026 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 Drug Administration, and Jay Bhattacharya, M.D., Ph.D., director of the National Institutes of Health.
NORD describes the Summit as a forum for cross-sector collaboration on complex challenges that no single organization or sector can solve alone. The panel is scheduled for October 26 during the event in Washington. NORD directs prospective attendees to NORDSummit.org to register and view the full agenda. The scheduled discussion will bring pharmaceutical company leaders and NORD’s CEO together to consider how innovation, policy and delivery connect to patient progress.