Rare Disease Leaders to Address Innovation Gap at NORD Summit

The panel features a cross-section of industry leadership, including BioMarin CEO Alexander Hardy, Jazz Pharmaceuticals CEO Renee Gala, and Otsuka North America President Tarek Rabah. Joining them is NORD CEO Pam Gavin, who intends to ground the discussion in the urgent, practical needs of patients living with over 10,000 distinct rare conditions. While scientific discovery has accelerated, the industry faces persistent hurdles in regulatory alignment, infrastructure, and treatment delivery that threaten to bottleneck the arrival of new therapies.

Quick, whose reporting at CNBC often bridges the gap between market dynamics and human impact, will steer the conversation toward the institutional shifts required to translate laboratory successes into widespread medical access. The summit, now in its 16th year, serves as a focal point for more than 900 stakeholders, including federal representatives like Acting FDA Commissioner Kyle Diamantas and NIH Director Jay Bhattacharya. The gathering aims to move beyond individual corporate success stories toward a collaborative, systemic approach to rare disease research and policy.