State Policy Analyst

National Organization f•Washington, DC

8d•Hybrid

About The Position

The National Organization for Rare Disorders (NORD) is the leading nonprofit organization serving the rare disease community in the United States. Join our team and be part of the transformation of science, policy, care and awareness raising that is improving the lives of the over 25 million Americans affected by rare diseases. We offer a competitive compensation and benefits package along with a collaborative work atmosphere, flexible telecommuting options, and opportunities for career growth and development. Learn more at www.rarediseases.org. The State Policy Analyst is responsible for implementing NORD’s policy and advocacy efforts in support of the rare disease community at the state level. The position will focus on rare disease policy issues related to supporting robust Rare Disease Advisory Councils and ensuring timely access to and affordability of diagnostics and treatments. This will include monitoring state legislative and regulatory proposals, building and leading coalitions in support of policies to help the rare disease community, and representing NORD at meetings with key stakeholders, including state legislative staff, elected officials and other government officials.

Requirements

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.

Nice To Haves

Masters in related field (public policy, public health) is a plus.

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.
Perform other duties and functions as assigned.