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

Location: This position may be a fully remote position, not based in the Washington, D.C. office.
Reports to: Director of Advocacy
Wage Category: $50,000 - $55,000

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

The EveryLife Foundation is a science-based nonprofit, nonpartisan advocacy organization dedicated to bringing treatments to the 30 million Americans with rare diseases. Currently, more than 93% of rare diseases have no FDA-approved treatment. The science exists for many of these diseases to be treated; however, treatments may never be developed because of roadblocks in the development process, such as a lack of investment and a challenging regulatory environment. The Foundation works with patient advocates, lawmakers, industry, academic scientists, the Food and Drug Administration (FDA), and 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 EveryLife Foundation for Rare Diseases’ advocacy program. This position works closely with the EveryLife Foundation team well and rare disease patient community. The RDLA State Advocacy Manager collaborates closely with and directly reports to, the Director of Advocacy.

Principal Duties And Responsibilities

  • Host quarterly conference calls for rare state/regional organizations to communicate best practices and share ideas and quarterly RDLA State Advocacy webinars;
  • Provides state content for the monthly RDLA newsletter containing policy analysis, action alerts and community events;
  • Plans, organizes, and coordinates state capital advocacy events;
  • 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;
  • Tracks efforts of state 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 sheet for introducing state level legislation;
  • Provides guidance, mentorship, resources, and support to state/regional organizations as needed;
  • Presents at patient advocacy events;
  • Develops relationships and maintain 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;
  • Meets with the Senior Director of Advocacy on a regular basis for supervision; and
  • Other duties as assigned.


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

Minimum Education:

4-year degree preferred

More Information


This is a full-time, direct-hire position. The salary range for this position is $50,000 – $55,000 commensurate with experience and includes a benefits package. Occasional travel, weekend, and evening work may be required.

How to Apply: 

To apply, please send a current resume and cover letter to Megan Pinegar at [email protected]