Director of State Policy

03 Jul, 2019


Director of State Policy

National Organization for Rare Disorders (NORD)
Washington, DC

About NORD

The National Organization for Rare Disorders (NORD) is the leading nonprofit organization serving the rare disease community. Join our team and be part of the transformation of science, policy, care and awareness that is improving the lives of the 30 million Americans impacted by rare diseases.

Since 1983, NORD has served as the voice of the rare disease community, providing advocacy for fair and enlightened public policies; education for patients, their families, medical professionals and the public; and leadership and representation for rare disease patient organizations. NORD supports medical research to promote the development of safe, effective diagnostics and treatments, and it provides a broad array of patient assistance programs to assure patient access to treatments. Learn more at www.rarediseases.orgOpens a New Window..

Position Summary

Reporting to the Vice President of Policy and Regulatory Affairs, lead NORD’s state policy and advocacy efforts before state regulatory agencies, governors’ offices, state legislatures, and other state health entities. Monitor state legislative and regulatory initiatives and provide support to grassroots state advocacy efforts. Represent NORD in meetings with state interest groups and coalitions, state legislators, state governors’, state regulatory agencies, state health insurance exchanges, and other state officials.

Essential Duties and Responsibilities

Monitor state legislative and regulatory proposals and compile information on state policy issues by completing summaries, comparisons and analyses of state policies

Research and implement NORD’s state public policy directives, including the development of innovative state health policy solutions to aid the rare disease community

Represent NORD in direct advocacy engagements with state legislative staff, governor’s administration officials, and state regulatory agency personnel

Coordinate efforts with state special interest groups and coalitions, including participating in relevant meetings as the NORD representative

Provide NORD state and local advocates with policy directives, consultation support, and policy materials

Draft testimony, correspondence, legislative amendments, and responses to rulemaking at the state level

Develop and maintain online state policy resources and information on NORD’s website

Collaborate with NORD’s Federal Policy staff on overlapping initiatives and policy directives

Assist NORD membership organizations with understanding state legislative processes and respond to inquiries on NORD state policy and rare disease issues

Craft educational materials for state government officials and conduct educational briefings and webinars as needed

Create annual State Policy Report Card, which includes research on various state policies and a corresponding grading system on such state policies

Serve as the state advocacy resource for NORD’s non-Policy employees

Performs other duties and functions as assigned.


Master’s degree in relevant field or J.D.

Knowledge of state legislative and regulatory processes required

3-7 years in health policy, with at least 3 years of experience in state policy.


Knowledge, Skills and Abilities

Excellent verbal and written communication skills, including an ability to explain and convey complicated policy issues in an understandable and digestible manner

Superior organizational and time management skills

Partnership and Coalition building abilities and experience

Capable of handling a full range of delegated responsibilities, work independently, exercise good judgment and display personal initiative in all areas assigned

Must be willing to travel regularly for state advocacy efforts

Learn more here

Job posted: 2019-07-03