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Patient Programs Manager
EveryLife Foundation for Rare Diseases in Washington, DC
Date Posted 04/13/2021
Employment Type Fulltime
Application Deadline Open until filled

The EveryLife Foundation for Rare Diseases (EveryLife) is seeking a Patient Programs 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 Patient Programs Manager is responsible for supporting the development and

implementation of patient programs in support of the Foundation’s mission. This position works

closely with the EveryLife Foundation team, as well as rare disease patients and industry

professionals. The Patient Programs Manager directly reports to the Senior Director of

Operations and Human Resources.

Responsibilities to include, but are not limited to:

  • Manages patient programs including Rare Artist, RARE Scholarships and the Rare Hub
  • Works with and is primary contact to patient community related to patient programs:
fields questions, assists navigating application process for RARE Scholarship and Rare

Artist, serves as contact for Rare Hub partners;

  • Coordinates judging process for annual Rare Artist contest;
  • Manages budgets for the Rare Artist, RARE Scholarships and Rare Hub;
  • Updates content on EveryLife’s patient program web pages;
  • Works with and manages external vendors regarding scholarship application submissions
and artist submission platform;
  • Manages internal operations of Rare Hub office, including greeting guests, organizing
office and ordering supplies, handling mail, answering the telephone and directing calls


  • Plans annual Rare Hub open house;
  • Works with communications teams on program announcements and awardees, creates
and updates materials related to patient programs, draft quarterly Rare Hub newsletter;
  • Supports the Foundation’s mission, vision and values it represents;
  • Maintains patient contacts and organizations in the database; and
  • Other duties as assigned.


The Patient Programs Manager will have:

  • Background in program programming;
  • 1-2 years background in database work, preferably Salesforce;
  • Strong organization and interpersonal skills; and
  • Excellent communication skills including the ability to draft, copy edit, and speak publicly.


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


4-year degree preferred

*Please mention NonprofitJobs to employers when applying for this job*
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