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YOUNG ADULT RARE REPRESENTATIVE (YARR) INTERN

YOUNG ADULT RARE REPRESENTATIVE (YARR) INTERN

The EveryLife Foundation for Rare Disease 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. 

 

YARR is a program that empowers young adults aged 16-30 in the rare disease community to become confident, skilled advocates for public policy and patient engagement. As a member of the YARR team, you will support the work of YARR through outreach, communications, event support, and general administrative tasks. This paid position will offer valuable hands-on experience in youth engagement and rare disease advocacy. 

 

Responsibilities and Duties

 

General YARR:

  • Assist with outreach and recruitment efforts for new YARR members
  • Develop and schedule engaging content for social media platforms
  • Respond to inquiries from prospective and current YARR members
  • Support logistics and planning for monthly General Assembly calls
  • Provide administrative support for events and activities
  • Help coordinate and participate in new YARR members meetings and exit interviews
  • Assist the Patient Engagement team on special projects as needed

 

Leadership Academy:

  • Assist with outreach and coordination of guest speakers
  • Assist with outreach to organizations serving the young adult rare disease population
  • Develop and schedule engaging content for social media platforms

 

Speakers Bureau:

  • Assist with registration cycle (promotion, respond to inquiries)
  • Assist with outreach to participants

 

      This paid internship will be between 10-15 hours per week from September through December 2025. The location for this position is flexible and can be either based in Washington, D.C., or remote. 

 

      HOW TO APPLY

      To apply please send a current resume and cover letter to careers@everylifefoundation.org with the subject line “YARR Internship Application”.