NORD Appoints Kathryn Lowell as Executive Vice President of Government Affairs to Bridge Rare Disease Policy and Innovation
核心洞察
The National Organization for Rare Disorders (搜索) (NORD) has appointed Kathryn Lowell as Executive Vice President of Government Affairs, effective June 9, 2026.
Lowell brings 15 years of experience from BioMarin Pharmaceutical, where she most recently served as Group Vice President of Global Government Affairs & Advocacy.
In her new role, Lowell will lead policy initiatives aimed at accelerating R&D, improving regulatory and reimbursement pathways, and expanding access to rare disease therapies.
The National Organization for Rare Disorders (搜索) (NORD) announced on June 9, 2026, the appointment of Kathryn Lowell as Executive Vice President (EVP) of Government Affairs. Lowell, a veteran of health policy and the life sciences sector, will lead NORD's government affairs and policy strategy from its Washington, D.C. headquarters, working closely with the CEO and executive team to advance a forward-looking policy agenda across the rare disease landscape.
Lowell's appointment comes at what NORD describes as "an inflection point for rare diseases (搜索), where science is advancing faster than policy or systems are adapting." Her mandate includes accelerating research and development, improving regulatory and reimbursement pathways, and helping translate scientific innovation into more approved and accessible therapies for the more than 30 million Americans living with rare diseases.
A Career Spanning Industry, Government, and the Non-Profit Sector
Lowell joins NORD following a 15-year tenure at BioMarin Pharmaceutical, a biotechnology company focused on developing therapies for rare genetic diseases. Most recently, she served as Group Vice President of Global Government Affairs & Advocacy, where she led global legislative and policy strategy. Her career also includes senior executive positions with the State of California, where she oversaw policy and program development for the Office of the Patient Advocate, the Department of Managed Care, and Medi-Cal. Earlier, Lowell spent five years on Capitol Hill working closely with the 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," NORD stated in its announcement. "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."
Aligning Policy with Scientific Progress
In her new role, Lowell will partner with NORD's network of more than 350 patient advocacy organization members, along with clinical, research, and policy stakeholders, to ensure that policy priorities are informed by community needs. A key focus will be helping organizations of all sizes 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. The opportunity for clinical advancement and understanding has never been greater," Lowell said. "My experience in industry, government, and 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."
Lowell emphasized her commitment to working with NORD colleagues and patient advocacy partners "to advance solutions that match the pace of scientific innovation, accelerate development, and expand access to therapies for patients and families."
NORD's Enduring Mission
Founded in 1983, NORD is a leading independent, nonpartisan, nonprofit patient advocacy organization dedicated to improving the health and lives of people living with rare diseases (搜索). The organization drives progress in rare disease research, care, and policy through its partnerships with more than 350 disease-specific member patient organizations. Lowell's appointment reflects NORD's continued role in bringing stakeholders together and advancing practical solutions to improve the lives of people living with rare diseases.