The three-day event, scheduled for October 25–27, serves as a central hub for researchers, patient advocates, and policymakers to synchronize efforts on drug development and diagnostic innovation. NORD CEO Pam Gavin emphasized that the participation of these federal officials marks a critical juncture in translating scientific laboratory breakthroughs into tangible clinical treatments for the rare disease community.
Federal Health Leaders to Headline 2026 NORD Rare Disease Summit
Acting FDA Commissioner Kyle Diamantas, NIH Director Jay Bhattacharya, and Surgeon General health communications director Stephanie E. Haridopolos will headline the 16th annual NORD Breakthrough Summit this October in Washington, D.C., joining 900 stakeholders to address the needs of 30 million Americans living with rare medical conditions.
Diamantas is expected to outline the FDA’s current regulatory priorities, building on his recent engagement with patient advocacy groups. Meanwhile, Bhattacharya will highlight the NIH's ongoing integration of artificial intelligence and gene-targeted therapy platforms. Haridopolos, who will receive the 2026 Rare Impact Award for her work on the Recommended Uniform Screening Panel, will lead discussions on expanding newborn screening protocols. The summit will conclude with a comprehensive panel featuring senior leadership from the FDA’s primary research and regulatory centers.
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