About NORD

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. Follow NORD at www.rarediseases.org and on Twitter at @RareDiseases.

Position Summary

The State Policy Manager is responsible for the development and implementation of NORDs 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 creating and implementing 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.

Essential Duties and 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 NORDs policy team on the research and implementation of NORDs public policy directives, including drafting comments, correspondence, testimony/statements, and responses to legislative or 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 NORDs 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 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.

Serve as a state policy advocacy and policy resource to NORDs non-advocacy teams.

Build strong working relationships with stakeholder counterparts.

Create one-pagers, toolkits, and other resources as needed to help support the work of new and existing RDACs.

Perform other duties and functions as assigned.

Education/Experience

Bachelors degree in a related field (public policy, political science) required. Masters in related field (public policy, public health) preferred.

At least 3 years of experience in public policy working in or with state government.

A proven interest in and commitment to the rare disease community.

Experience with building and leading diverse coalitions.

Knowledge, Skills and Abilities

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.

Working Conditions

This position is fully remote with required travel for special events, conferences and meetings. Must be based in the western half of the United States.

Essential functions are typically performed in an office setting with a low level of noise. 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.

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