Events Manager, EveryLife Foundation for Rare Diseases

Location: This position is required to regularly commute to the Washington, D.C. office.
Wage Category: $52,000 - $57,000

The EveryLife Foundation for Rare Diseases is seeking an Events Manager to join its team.

The EveryLife Foundation for Rare Diseases 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, 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 Events Manager supports the preparation and implementation of all Foundation events. The position works closely with all staff across the Foundation, rare disease patients, vendors, consultants, and industry professionals. The Events Manager collaborates closely with and directly reports to the Senior Director of Operations and Events.

Principal Duties And Responsibilities

  • Supports all aspects of planning and execution for in-person, hybrid, and virtual events including but not limited to contract negotiations, payment schedules, securing vendors, conducting site visits, food and beverage orders, sourcing technology, webpage updates, and AV needs;
  • Aids in the planning and setup of all necessary technology for the virtual aspects of events, including livestreams, webcasts, virtual meetings and webinars, and closed captioning and translations;
  • Manages on-site production and clean-up for in-person and hybrid events;
  • Develops, implements, and executes event timelines; Drafts communication to event participants, attendees, and staff;
  • Plans and executes administrative details for events including preparation of materials, coordination of supplies, and creating registration lists and nametags;
  • Supports alliance development team to fulfill and grow sponsor experiences;
  • Develops and maintains vendor, contact, and consultant relationships, and sources new vendors as needed, obtaining competitive bids;
  • Supports, tracks, and adheres to event budgets, and works with outside partners on shared events for budget reconciliation;
  • Responds to all communications promptly and serves as a main point of contact for events;
  • Supports the Foundation’s mission, vision, and values it represents;
  • Anticipates project needs, prioritizes tasks on competing timelines, and meets deadlines;
  • Updates and maintains records in Salesforce; and
  • Other duties as assigned.Occasional travel, weekend, and evening work may be required.


The Events Manager will have:

  • 2-3 years of experience in event planning in-person and virtual events;
  • Strong organizational skills including attention to detail, analytical thinking, and time management;
  • Excellent communication, collaboration, and interpersonal skills;
  • Readiness to respond to unexpected situations or challenges quickly and effectively; and
  • Competencies in technology such as Salesforce, HubSpot, and web conferencing services, or willingness to quickly learn.


4-year degree preferred

More Information


This is a full-time, direct-hire position. The salary range for this position is $52,000 – $57,000 commensurate with experience. The benefits package includes health, vision, and dental insurance, FSA, wellness reimbursement, cellphone stipend, WIFI stipend, 401k 6% match, and generous paid leave.

How to Apply:

To apply, please send a current resume and cover letter to with “Events Manager” in the subject line.