What are the responsibilities and job description for the Vice President of Public Policy & Advocacy position at National Organization for Rare Disorders?
About NORD
The National Organization for Rare Disorders (NORD) is the leading nonprofit representing the 30 million Americans living with rare diseases. Since 1983, NORD has been the voice of patients, advancing fair public policies, supporting medical research, and ensuring patient access to care. NORD is results-driven: we advocate at the highest levels, educate the public and medical community, and strengthen rare disease organizations nationwide. Everything we do is measured by impact for patients and families.
Who Thrives In This Role
This is a high-impact, senior leadership role for someone who combines strategic vision with hands-on execution. You excel when you:
Reporting to the CEO, The Vice President of Public Policy and Advocacy leads NORD’s engagement with federal and state policymakers to advance the interests of the rare disease community. This role is both strategic and operational. You will be responsible for shaping NORD’s policy agenda, managing a team, and ensuring measurable results. Success in this position requires more than connections on Capitol Hill. It demands proven experience leading people, driving outcomes, and navigating complex policy environments with discipline and focus. The Vice President will serve as NORD’s key representative to policymakers, regulators, and partners, while driving a team culture of accountability, focus, and collaboration.
Key Responsibilities
This is a Washington, DC-based role with travel required for meetings and conferences.
Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.
NORD is an equal opportunity employer. All applicants will be considered for employment without attention to race, color, religion, sex, sexual orientation, gender identity, national origin, veteran or disability status.
The National Organization for Rare Disorders (NORD) is the leading nonprofit representing the 30 million Americans living with rare diseases. Since 1983, NORD has been the voice of patients, advancing fair public policies, supporting medical research, and ensuring patient access to care. NORD is results-driven: we advocate at the highest levels, educate the public and medical community, and strengthen rare disease organizations nationwide. Everything we do is measured by impact for patients and families.
Who Thrives In This Role
This is a high-impact, senior leadership role for someone who combines strategic vision with hands-on execution. You excel when you:
- Lead policy initiatives that produce tangible results, not just recommendations.
- Have deep experience navigating federal and state policymakers and agencies, managing complex stakeholder relationships with diplomacy and credibility.
- Can set priorities, inspire teams, and ensure follow-through on key objectives.
- You combine strategic thinking with hands-on execution, moving easily from big-picture policy to day-to-day advocacy work..
- Bring humility, resilience, and the ability to integrate multiple perspectives, even when you are the expert.
- Thrive in a fast-paced, evolving environment and are motivated by measurable impact for patients.
Reporting to the CEO, The Vice President of Public Policy and Advocacy leads NORD’s engagement with federal and state policymakers to advance the interests of the rare disease community. This role is both strategic and operational. You will be responsible for shaping NORD’s policy agenda, managing a team, and ensuring measurable results. Success in this position requires more than connections on Capitol Hill. It demands proven experience leading people, driving outcomes, and navigating complex policy environments with discipline and focus. The Vice President will serve as NORD’s key representative to policymakers, regulators, and partners, while driving a team culture of accountability, focus, and collaboration.
Key Responsibilities
- Set and execute NORD’s federal and state policy strategy, ensuring measurable results for the rare disease community.
- Represent NORD with policymakers, regulators, and key stakeholders as the organization’s senior voice in government affairs.
- Build and manage relationships that advance NORD’s agenda while maintaining professionalism and credibility.
- Lead and develop a high-performing policy team with clear direction, accountability, and consistent execution.
- Advise NORD leadership on evolving legislation and regulation, providing actionable recommendations.
- Evaluate legislation and regulations, determine risks and opportunities, and drive organizational actions.
- Collaborate across departments to integrate policy priorities with NORD’s broader strategic initiatives.
- Develop and execute strategic programming in support of legislative and advocacy goals, including events, webinars, town halls, caucus meetings, briefings, white papers and other publications.
- Bachelor’s degree in public policy, health policy, or related field required; Master’s preferred.
- 15 years of proven policy experience with measurable outcomes in legislative, regulatory, or advocacy roles.
- Track record of managing teams, setting priorities, and holding staff accountable.
- Demonstrated ability to build coalitions and sustain high-level relationships across government, industry, and nonprofits.
- Experience balancing strategic vision with day-to-day execution.
- Deep knowledge of federal and state legislative and regulatory processes.
- Strong leadership skills with the ability to inspire, direct, and develop teams.
- Excellent analytical and communication skills, both written and verbal.
- Ability to translate complex policy issues into clear recommendations and actions.
- Collaborative mindset with a disciplined, outcome-oriented approach.
- Proficiency with Microsoft Office and quickly adapting to new technology tools.
This is a Washington, DC-based role with travel required for meetings and conferences.
Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.
NORD is an equal opportunity employer. All applicants will be considered for employment without attention to race, color, religion, sex, sexual orientation, gender identity, national origin, veteran or disability status.