The EveryLife Foundation for Rare Diseases is searching for a Vice President of Patient Engagement to join its team.

The EveryLife Foundation for Rare Diseases (EveryLife Foundation) is a science-based nonprofit, nonpartisan advocacy organization dedicated to bringing treatments to over 30 million Americans with rare diseases. The Foundation works with patient advocates, lawmakers, industry, academic scientists, federal agencies, payers, and other key stakeholders to advance the equitable development of and access to lifesaving diagnoses, treatments, and cures.

The Vice President of Patient Engagement is responsible for leading the emboldened engagement of the rare disease community with the broad stakeholder community. The EveryLife Foundation for Rare Diseases is a community-led, community-driven organization. This position works closely with all members of the EveryLife Foundation team as well as rare disease patients, caregivers, researchers, industry professionals, payers, federal agency partners, Congressional and government staff, Members of Congress, and state and local lawmakers. The Vice President of Patient Engagement reports to the Chief of Policy, Advocacy, and Patient Engagement.

This position may be a fully remote position, not based in the Washington, D.C. office.

DUTIES AND RESPONSIBILITIES

Leads strategic growth of the Patient Engagement program and supports the patient engagement team in planning and implementing all programming;
In collaboration with the Chief of Policy, Advocacy, & Patient Engagement and policy team, leads Foundation efforts to build off The Guide to Patient Involvement in Rare Disease Therapy Development to facilitate rare disease patient engagement in the regulatory ecosystem and within patient representative roles;
In collaboration with the Chief of Policy, Advocacy, & Patient Engagement and policy team, leads Foundation efforts to facilitate rare disease patient community participation in the access ecosystem and on formal committees related to payer decision making;
Provides strategic direction and leadership to the Foundation’s Diversity, Equity, Inclusion, and Access (DEIA) program, including deepening current programing to ensure that rare disease patient communities are prepared for engagements in Patient Focused Drug Development;
In collaboration with the Vice President of Advocacy, supports planning for the DEIA cohort of the Rare Advocacy Learning program;
Provides strategic direction and guidance for the Pride in Rare Initiative, a program of the Foundation DEIA program aimed at creating a distinct, safe, and empowered space for those living within the intersection of the LGBTQIA+ identity and rare disease patient experiences;
Manages the YARR Program Manager, providing strategic direction and oversight in optimizing the program and engaging young adults in the rare disease community, including expanding YARR representation across disease areas, geographies, and demographics;
Manages Director of Patient Programs, providing oversight and support of patient programs, including Rare Artist and #RAREis Scholarship;
Works closely with the policy and advocacy teams to develop strategy for supporting patient advocacy groups affiliated with Community Congress and RDLA;
Supports development, planning, and execution of the Young Adult Hill Day;
Leads strategic planning and coordination of national conference materials for patient engagement speaking opportunities/presentations and outlining the “booth circuit” for patient engagement team;
Works in collaboration with communications team to provide patient engagement team updates to patient organizations and industry partners, as well as the rare disease community at large;
Provides support on special policy projects and Foundation publications;
Approves relevant content updates for the Foundation’s website;
Reviews and approves articles, action alerts, papers, one sheets, and various outreach items specific to EveryLife’s patient community outreach; and
Other duties as assigned.

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

QUALIFICATIONS

Bachelor’s degree, with 10 years of patient advocacy community experience, rare disease experience preferred;
Demonstrated experience and expertise in patient focused drug development ecosystem;
Demonstrated experience in management and leadership;
Proven ability to manage budgets and implement strategic planning initiatives; and
Excellent communication skills including public speaking.

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EveryLife Foundation for Rare Diseases

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Vice President of Patient Engagement