NORD Taps BioMarin Veteran to Lead Rare Disease Policy Push
Event summary
- Kathryn Lowell joins NORD as EVP of Government Affairs on June 9, 2026.
- Lowell brings 15 years of experience from BioMarin Pharmaceutical and government roles.
- She will lead policy efforts to accelerate rare disease research and improve therapy access.
- NORD represents 30 million Americans with rare diseases and partners with 350 advocacy groups.
The big picture
NORD's appointment reflects the growing disconnect between rapid scientific advances in rare diseases and slower-moving policy systems. Lowell's industry-government background positions her to advocate for structural changes that could unlock faster therapy development and broader patient access. The move underscores how nonprofit advocacy groups are increasingly adopting corporate-style policy operations to navigate complex healthcare landscapes.
What we're watching
- Policy Alignment
- How Lowell will bridge gaps between scientific innovation and regulatory frameworks.
- Stakeholder Coordination
- Whether NORD can unify 350 advocacy groups around cohesive policy priorities.
- Regulatory Agility
- The pace at which Lowell can streamline approval and reimbursement pathways.