Job Description

Position Overview:

The Manager/Senior Manager, Government Affairs supports the Rare Disease Company Coalition’s (RDCC) advocacy efforts on federal and state legislative and regulatory issues that impact the rare disease ecosystem and RDCC member companies. This role is responsible for contributing to policy strategy, engaging with policy makers and government agencies, coordinating external consultants, and advancing initiatives that support innovation and patient access. While primarily remote, the position requires residence in the Washington, DC area to allow for regular participation in in-person meetings, Hill engagements, member events, and occasional in-person collaboration with colleagues. This position reports to the Executive Director.

About the Rare Disease Company Coalition:

The Rare Disease Company Coalition is a trade association that represents life science companies dedicated to discovering, developing, and delivering treatments for people living with a rare disease. Founded in 2021, the RDCC has emerged as a preeminent leader and advocacy partner on rare disease issues among policy makers in our nation’s capital. RDCC offers a comprehensive benefits package designed to support the health, well-being, and financial security of our employees. Benefits include a competitive salary and bonus program; medical and dental coverage at no cost to employees; a 401(k) savings plan with a generous employer match; employer health savings account contributions; life insurance; and short- and long-term disability coverage. Employees also enjoy a generous holiday, vacation, and sick leave program, along with two week-long organization-wide shutdowns each year.

Key Responsibilities:

Legislative Affairs, Policy and Advocacy:

• Shape public policy by ensuring lawmakers, agencies, and key decision-makers are informed of RDCC’s positions on issues affecting rare disease innovation.
• Collaborate and assist in the development and implementation of advocacy strategies to advance legislative and regulatory solutions that benefit the rare disease community.
• Build and maintain relationships with policy makers and external stakeholders.
• Represent RDCC in meetings with congressional staff, administration officials, and partner organizations to advocate for RDCC priorities.
• Monitor and analyze federal and state policy developments; provide timely updates and recommendations to RDCC leadership and members.
• Develop and deliver advocacy materials (e.g., talking points, policy briefs, fact sheets) to support engagement with policymakers and stakeholders.
• Participate in industry forums, briefings, and conferences to expand networks and strengthen RDCC’s presence in the policy community.
• Collaborate with the communications team to craft clear messaging that resonates with policy makers and rare disease stakeholders.

Member Engagement:

• Prepare agendas, materials, and follow-ups for policy committees, work groups, and Board meetings.
• Provide timely updates to members and the Board on policy priorities, advocacy activities, and legislative or regulatory developments.
• Develop regular reports and resources that inform members of RDCC’s initiatives and progress.

Operations:

• Deliver administrative and logistical assistance as needed.
• Coordinate the planning and execution of internal and external events, including Board and committee meetings, congressional briefings, and Hill fly-ins.
• Perform all other duties as necessary to support the success of the coalition.

Qualifications:

Education: Bachelor’s degree required.

Experience:

• Minimum of 5 years of experience in government affairs, public policy, or advocacy, with exposure to healthcare or rare disease issues preferred.
• Experience working with legislative processes, government agencies, and advocacy groups.
• Experience on Capitol Hill or other government experience preferred.

Skills:

• Strong written and verbal communication skills, with the ability to effectively communicate complex policy issues to diverse audiences.
• Ability to track and analyze legislative and regulatory developments, providing actionable insights.
• Proficient in Microsoft Office Suite and familiarity with advocacy and lobbying platforms (e.g., tracking software, CRM systems).
• Strong research skills and attention to detail.
• Ability to work independently and as part of a team in a fast-paced environment.

Personal Attributes:

• Passionate about rare disease issues and committed to advancing the needs of the rare disease community.
• Proactive, with a strong sense of initiative and the ability to manage multiple priorities.
• Professional, with strong interpersonal skills and the ability to build relationships with a diverse range of stakeholders.
• Results-oriented and driven to achieve meaningful impact through advocacy and policy efforts.

Salary Range: Manager: $80,000 – $100,000/ Senior Manager: $90,00 - $120,000 per annum. Salary is commensurate with experience and other compensable factors.

Application Process:

Interested candidates should submit a resume and optional cover letter to [email protected]. The position will remain open until filled.

The Rare Disease Company Coalition is an equal opportunity employer. We celebrate diversity and are committed to creating an inclusive environment for all employees.

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