The EveryLife Foundation for Rare Diseases is seeking a State Policy 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 State Policy Manager provides support for the state strategic priorities of the EveryLife Foundation for Rare Diseases policy program. This position works closely with the EveryLife Foundation team as well as members of the EveryLife Community Congress and rare disease patient community. The State Policy Manager collaborates closely with and directly reports to, the Vice President of Policy.
Principal Duties And Responsibilities
- Advances state-level rare disease policies in coordination with Community Congress Working Groups;
- Devises and implement state-level legislative campaign strategy to pass RUSP Alignment legislation;
- Builds relationships with and represents EveryLife in meetings with state elected and career professionals;
- Drafts testimony, support letters, and other content intended for elected officials;
- Manages communications and training for advocates engaged in advancing RUSP Alignment legislation;
- Conducts policy research, gathers data and other information to support policy positions;
- Communicates the needs of the rare disease community related to state-level rare disease policies to medical professional societies, collaborating organizations, industry partners, legislators, and relevant policymakers;
- Monitors and analyzes relevant activity and legislation at the state level;
- Collaborates with the policy team to identify and lead evidence-based initiatives that promote Foundation state policy priorities;
- Creates meeting content and identifies priorities for the Foundation’s Community Congress Working Groups;
- Assists in maintaining database contacts to a high degree of correctness and completeness;
- Represents the Foundation in coalition activities related to EveryLife’s state policy priorities;
- Collaborates with the State Advocacy Fellow to provide policy trainings or other educational information about the Foundation’s state policy priorities;
- Participates in Foundation events;
- Meets with the Vice President of Policy on a regular basis for supervision; and
- Other duties as
Occasional travel, weekend, and evening work may be required.
Qualifications
- Bachelor’s degree, with 2-3 years’ experience in grassroots advocacy and Experience working with patient communities and state policy 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
