Director of State Policy
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..
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