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 Associate Director of Policy is responsible for supporting NORDs policy and advocacy efforts with Congress, state and regulatory bodies, and tother advocacy groups. Monitor legislative and regulatory proposals, research and draft NORD submissions and provide education and support to staff on NORD positions and efforts on legislative and regulatory issues. Represent NORD at meetings with congressional members and staff, administration officials, regulatory agencies, member organizations and other interest groups.

Essential Duties and Responsibilities

Effectively monitor and engage on federal and state legislation, regulations, or court cases that could impact the rare disease community, including issues related to coverage of health care providers and services, affordability, and coverage of services within Medicare, Medicaid, the Affordable Care Act programs.

Work closely with the Director and the Vice President of Public Policy of Regulatory Affairs to research and implement NORDs policy priorities, including the development of innovative health policy solutions to aid the rare disease community with in federal and state governments.

Draft internal and external documents to support NORDs policy positions, including testimony, correspondence, legislative amendments, talking points and responses to rule making.

Develop relationships and represent NORD in meetings with congressional members, state legislators and staff, administration officials, and regulatory agency personnel.

Provide leadership within coalitions and amongst other rare disease community stakeholders to coordinate efforts on legislative and regulatory issues.

Provide education to NORD membership organizations on the legislative process and answer inquiries on NORD policy and rare disease issues

Work with NORDs Policy and Advocacy Taskforce members to ensure they are informed and effective advocates in support of key policy issues at the state and federal level.

Serve as an advocacy and policy resource to NORDs non-advocacy employees.

Provide leadership within NORD policy team on effective processes and organization to facilitate smooth team operations.

Perform other duties and functions as assigned.

Education/Experience

Bachelors degree in a related field (public policy, medical affairs) required

Masters degree in public health or policy strongly preferred

At least 5 years of experience in public policy

A proven interest in and commitment to the rare disease community

Knowledge, Skills and Abilities

In-depth knowledge of legislative and regulatory processes

Excellent organizational, verbal and written communication skills

Capable of handling a full range of delegated responsibilities and work independently

Exercise good judgment and display personal initiative in all areas assigned

Proficiency with Microsoft Office

Working Conditions

This position is hybrid based in Washington, DC. Occasional travel is required.

Essential functions are typically performed in an office setting with a moderate 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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