Finance and Operations Manager, The EveryLife Foundation for Rare Diseases

The EveryLife Foundation for Rare Diseases (EveryLife) is seeking a Finance and Operations Manager to join its team in Washington, D.C.

The EveryLife Foundation is a science based nonprofit, nonpartisan advocacy organization dedicated to bringing treatments to the 30 million Americans with rare diseases. Currently, there are fewer than 400 approved treatments for 7000 rare diseases. 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 organizations, industry, academic scientists, the Food and Drug Administration (FDA), and National Institutes of Health (NIH) to improve the clinical development process.

The Finance and Operations Manager is responsible for supporting budget planning and developing and executing a fiscal strategy to make the for financial and organizational excellence. This position coordinate various internal activities and maintains operations for the Rare Hub. The position works closely with the EveryLife Foundation team as well as rare disease patients, industry professionals and the Board of Directors. The Finance and Operations Manager directly reports to the Senior Director of Operations and Human Resources.

Principal Duties And Responsibilities

Responsibilities to include, but are not limited to:

  • Work with independent auditors for annual audit;
  • Process invoices and staff reimbursements; – manage sponsorship invoicing to ensure income is received;
  • Support Senior Director of Operations and Human Resources with credit card billing, monthly program reports and quarterly board reports;
  • Prepare and file annual state nonprofit and business license forms;
  • Schedule internal all-staff and Board meetings -, and meetings with key external people including the Board Chair, Board members and vendors;
  • Coordinate Washington, D.C. travel for remote staff and Board Chair;
  • Manage internal operations of EveryLife office with assistance from the Senior Director of Operations. Includes greeting guests, organizing office and ordering supplies, serving as main contact with external vendors, handling mail, making bank deposits, answering the telephone and directing calls appropriately;
  • Serve as primary contact for Rare Hub partners including writing quarterly Rare Hub updates and occasionally providing some administrative support;
  • Provide content updates and manage Rare Hub and EveryLife financial webpages;
  • Plan and implement celebrations for birthdays/anniversaries, staff appreciation and development events, including the annual Rare Hub open house and assist with strategic planning process;
  • Provide administrative support to Senior Director of Operations and Human Resources, Executive Director and Board Chair as needed;
  • Work in Salesforce to update and maintain applicable contacts; and
  • Other tasks as assigned.


The Finance and Operations Manager will have:

  • 1-2 years background in accounting, mathematics or business. Experience working with QuickBooks is preferred;
  • 1-2 years background in scheduling and operations;
  • Strong organization and interpersonal skills;
  • Excellent communication skills including the ability to draft, copy edit, and speak publicly.

More Information

This is a full-time, direct-hire position. Compensation for this position is commensurate on experience and includes a competitive benefits package. This position is based in Washington, D.C. and may require occasional travel, weekend and evening work.

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

4-year degree preferred