Washington, D.C. – October 06, 2026 -- CNBC's Becky Quick will moderate a rare disease leadership dialogue featuring the CEOs of BioMarin, Jazz Pharmaceuticals and Otsuka North America Pharmaceutical alongside NORD CEO Pam Gavin, the National Organization for Rare Disorders announced.
Panel convenes three biopharma chiefs at NORD's Breakthrough Summit on October 26
The session, titled "Next Decade of Rare Disease: A CEO Leadership Dialogue," takes place at 11 a.m. ET on Monday, October 26, in Washington, D.C., during the three-day NORD Rare Diseases & Orphan Products Breakthrough Summit running October 25–27. 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.
Discussion targets the gap between scientific breakthroughs and patient access across 10,000-plus rare diseases
Organizers framed the conversation around translating individual drug breakthroughs into broader progress, addressing regulatory frameworks, investment and treatment delivery infrastructure needed to scale innovation. Gavin said science is "opening doors that would have been unimaginable even a decade ago," but cautioned that discovery alone does not guarantee patient access, calling for leadership across the rare disease ecosystem to remove barriers.
Summit draws 900-plus ecosystem leaders in its 16th year, with federal health officials attending
The 2026 Breakthrough Summit will host more than 900 leaders spanning rare disease research, treatment, policy and access. Scheduled speakers include Kyle Diamantas, Acting Commissioner of the U.S. Food and Drug Administration, and Jay Bhattacharya, Director of the National Institutes of Health. Quick, who co-anchors CNBC's "Squawk Box" and hosts "CNBC Cures," has a personal connection to rare disease as the parent of a child living with one. Registration and the full agenda are available at NORDSummit.org.