Rare Disease Legislative Advocates (RDLA) State Advocacy Manager, EveryLife Foundation for Rare Diseases

Location: This position is required to regularly commute to the Washington, D.C. office.
Reports to: $55,000 - $61,000

The EveryLife Foundation for Rare Diseases is seeking a Rare Disease Legislative Advocates (RDLA) State Advocacy Manager to join its team.

The EveryLife Foundation for Rare Diseases is a nonprofit, nonpartisan advocacy organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures. The Foundation works with patient advocates, lawmakers, industry, academic scientists, the Food and Drug Administration (FDA), and the National Institutes of Health (NIH) to advance the equitable development of and access to lifesaving diagnoses, treatments, and cures.

The RDLA State Advocacy Manager provides support for the strategic priorities and support of the Foundation’s advocacy program. This position works closely with the EveryLife Foundation for Rare Diseases team and rare disease patient community. The RDLA State Advocacy Manager collaborates closely with and directly reports to, the Vice President of Advocacy.

Principal Duties And Responsibilities

• Hosts quarterly conference calls for rare state/regional organizations to communicate best practices and encourage collaboration and quarterly RDLA State Advocacy webinars;

• Provides state content for the monthly RDLA newsletter containing policy analysis, action alerts, and community events;

• Plans and organizes an annual state organization leaders in-person meeting;

• Plans, organizes, and coordinates state capital advocacy events, Rare Disease State Advocacy Days;

• Updates RDLA state advocacy hub webpage and individual state pages;

• Participates in national patient state advocacy calls and meetings;

• Coordinates opportunities to highlight and promote state organizations such as exhibits at rare disease conferences and speaking opportunities;

• Supports the development of state legislative caucuses;

• Supports the development of rare disease state-based organizations;

• Tracks efforts of state rare disease advisory councils;

• Tracks and creates action alerts and reports for rare disease state-level legislation;

• Develops effective resources and tools for the rare disease advocacy community, including tip sheets;

• Supports community and EveryLife coalitions on advocacy for rare disease state initiatives;

• Provides guidance, mentorship, resources, and support to state/regional organizations as needed;

• Presents at patient advocacy events;

• Develops relationships and maintains engagement with partner patient organizations;

• Assists in maintaining contacts database to a high degree of correctness and completeness;

• Represents the Foundation in coalition activities related to EveryLife’s state advocacy priorities;

• Collaborates with the policy team related to policy trainings, state activations, or other educational information about the Foundation’s state policy and newborn screening priorities;

• Participates in Foundation events; and

• Other duties as assigned.

• Occasional travel, weekend, and evening work may be required.

Qualifications

• Bachelor’s degree, with 2-3 years’ experience in grassroots advocacy and policy. Experience working with patient communities is a bonus;

• Strong organization and interpersonal skills;

• Ability to use technology such as WordPress, Salesforce, and web conferencing services, or willingness to quickly learn; and

• Excellent communication skills including the ability to draft, copy edit, and speak publicly.

More Information

Benefits
This is a full-time, direct-hire position. The salary for this position is commensurate on experience, ranging $55,000 – $61,000. The benefits package includes health, vision, and dental insurance, FSA, wellness reimbursement, cellphone stipend, WIFI stipend, 401k 6% match, professional development, and generous paid leave.

How to Apply
To apply, please send a current resume and cover letter to careers at careers@everylifefoundation.org, with “RDLA State Advocacy Manager” in the subject headline.