Brett Bordini | Professor
Medical College of Wisconsin

Day 2 - World Orphan Drug Congress USA 2026 @ 14:40

From Designation to Impact: How NORD Centers of Excellence Are Building Scalable Infrastructure for Rare Disease Care

This NORD-led spotlight session will begin with a structured presentation outlining the NORD Centers of Excellence program—its rationale, design principles, and role in strengthening rare disease care infrastructure. The presentation will focus on how standardized designation, accountability, and collaboration improve diagnosis, care coordination, and health system readiness.

Following the presentation, NORD will facilitate a brief discussion with select local Centers of Excellence representatives to highlight real-world implementation and early impact within health systems. Together, the session will demonstrate why care delivery infrastructure is an essential complement to therapeutic innovation, with implications for patient outcomes, access, and clinical trial readiness.

Moderator: Marybeth McAfee, VP, Community and Medical Affairs, National Organization for Rare Disorders

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Marybeth McAfee / From Designation to Impact: How NORD Centers of Excellence Are Building Scalable Infrastructure for Rare Disease Care

Marybeth McAfee, VP, Community and Medical Affairs,
National Organization for Rare Disorders

Marybeth McAfee, MA, GC, is Vice President of Community and Medical Affairs at the National Organization for Rare Disorders (NORD®), where she leads Medical Affairs, Community Engagement, Membership, Educational Initiatives, and Information Services. She also oversees NORD’s Rare Disease Centers of ...

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Sabahat Bokhari, Professor of Cardiology, Rutgers Robert Wood Johnson Medical School

Brett Bordini, Professor, Medical College of Wisconsin

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Brett Bordini / From Designation to Impact: How NORD Centers of Excellence Are Building Scalable Infrastructure for Rare Disease Care

Brett Bordini, Professor,
Medical College of Wisconsin

Dr. Bordini is a Professor of Pediatrics in the Division of Hospital Medicine at the Medical College of Wisconsin and is co-director of the Nelson Service for Undiagnosed and Rare Diseases at Children's Wisconsin. He is co-chair of the Diagnostic Odyssey Working Group for the NORD Center of...

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Samuel Finlayson, SVP, Medical AI, Open Evidence

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Samuel Finlayson / From Designation to Impact: How NORD Centers of Excellence Are Building Scalable Infrastructure for Rare Disease Care

Samuel Finlayson, SVP, Medical AI,
Open Evidence

Samuel Finlayson, MD, PhD is a physician-scientist with expertise in artificial intelligence and rare pediatric disease. As SVP of Medical AIat OpenEvidence, he leads various efforts in AI product development, clinical data science, and collaborations with nonprofit organizations toco-create...

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