Washington, D.C. — June 9, 2026 — The National Organization for Rare Disorders (NORD®), representing the 30 million Americans living with rare diseases, today announced the appointment of Kathryn Lowell as Executive Vice President (EVP), Government Affairs.
In this role, Lowell will lead NORD’s government affairs and policy, working closely with the CEO and as a key member of the executive team, to advance a forward-looking policy agenda that supports innovation, development, and access across the rare disease landscape.
Lowell brings substantive and unparalleled experience in health policy, government affairs, and the life sciences sector. She spent 15 years at BioMarin Pharmaceutical, most recently as Group Vice President of Global Government Affairs & Advocacy, where she led global legislative and policy strategy. Previously, she held senior executive positions with the State of California overseeing policy and program development for the Office of the Patient Advocate, Department of Managed Care and Medi-Cal. Furthermore, she spent five years on Capitol Hill working closely with the powerful House Ways and Means Committee.
“Kathryn brings a rare combination of policy expertise, cross-functional leadership, and deep experience in the orphan drug development landscape,” said NORD CEO Pamela K. Gavin. “We are at an inflection point for rare diseases where science is advancing faster than policy or systems are adapting. Kathryn has the right background to advance our advocacy and legislative impact by leveraging NORD’s national platform to change what is possible for patients and families.”
As EVP, Lowell will focus on advancing policy solutions that accelerate research and development, improve regulatory and reimbursement pathways, and help translate scientific innovation into more approved and accessible therapies.
In partnership with NORD’s network of more than 350 patient advocacy organization members and a broad set of clinical, research, and policy stakeholders, Lowell will help ensure that policy priorities are informed by community needs and that organizations of all sizes are better positioned to navigate and engage in an increasingly complex policy environment.
“I am excited to join NORD at such a pivotal moment for the rare disease community,” said Lowell. “The opportunity for clinical advancement and understanding has never been greater. My experience in industry, government, and in the non-profit sector is an excellent foundation to serve the broader rare disease community. The next phase of progress will depend on how effectively we align policy, science, and the patient community. I look forward to working with colleagues across NORD and with our patient advocacy partners to advance solutions that match the pace of scientific innovation, accelerate development, and expand access to therapies for patients and families.”
To learn more about NORD’s Leadership Team, visit rarediseases.org/leadership.
