National Organization for Rare Disorders · 19 hours ago
State Policy Analyst
Washington, DC
Full-time
Hybrid
Mid Level
3+ years expThe National Organization for Rare Disorders (NORD) is the leading nonprofit organization serving the rare disease community in the United States. The State Policy Analyst is responsible for implementing NORD’s policy and advocacy efforts at the state level, focusing on rare disease policy issues and ensuring access to diagnostics and treatments.
Health CareMedical
Responsibilities
Monitor state legislative and regulatory activity, including but not limited to rare disease advisory councils, utilization management, patient out of pocket costs for treatment and care, and comprehensive health insurance
Develop innovative legislative and regulatory health policy proposals in designated issue areas to aid the rare disease community
Work closely with other members of NORD’s policy team on the research and implementation of NORD’s public policy directives, including drafting comments, correspondence, testimony/statements, and responses to legislative and regulatory activity
Attend legislative meetings, hearings, and markups, as well as meetings with state government officials as a representative of NORD, providing expertise and guidance to support NORD’s policy positions
Lead outreach to key stakeholders and coalitions, including organizing meetings and webinars to coordinate efforts on legislative and regulatory issues including advocacy days at state capitals
Serve as the state policy point of contact for Rare Disease Advisory Councils, NORD member organizations, and other partners, engaging, educating and supporting Regional Policy and Advocacy Taskforces on pending legislation to enable effective advocacy
Create one-pagers, toolkits, and other resources as needed to help support the work of new and existing RDACs
Serve as an internal state policy advocacy and policy resource to NORD’s non-advocacy teams
Build strong working relationships with stakeholder counterparts
Qualification
Required
Bachelor's degree in a related field (public policy, public health, political science) required
At least 3 years of experience in public policy working in or with state government on public health issues
A proven interest in and commitment to the rare disease community
Experience with building and leading diverse coalitions
In-depth knowledge of state legislative and regulatory processes
Excellent organizational, verbal (including public speaking) and written communication skills
A professional and resourceful style; the ability to take initiative, and to manage multiple tasks and projects at a time
Ability to work both independently without close oversight, but also a team player who will productively engage with others at varying levels of seniority within and outside NORD
Ability to travel up to 30% of the time
Proficiency with Microsoft Office and Teams
Preferred
Masters in related field (public policy, public health) is a plus
Benefits
Competitive compensation and benefits package
Flexible telecommuting options
Opportunities for career growth and development
Company
National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is an independent patient advocacy organization dedicated to helping individuals with rare diseases and the organizations that serve them.
51-200 employees
Funding
Current Stage
Growth StageLeadership Team
Pamela Gavin
Chief Executive Officer
Recent News
2026-01-06
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