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Community Engagement Specialist

Job Description

Title:  Community Engagement Specialist
Location: Remote with minimal travel
Terms: 20 hours per week/ hourly compensation /at-will position
Timeframe: Open until filled, Posted 3/21/22
Interested applicants please send resume and cover letter to by 4/15/22.

Position Overview
This is an exciting opportunity to engage with patients and volunteers to fulfill the mission of this small, passionate rare disease organization to support those affected with pheochromocytoma and paraganglioma.  The Community Engagement Specialist reports to the Executive Director and works with dozens of dedicated volunteers to move the Pheo Para Alliance mission forward.

Responsibilities include the following, some projects are ongoing and some are annual.

  • Patient Education – Support creation of education and awareness programs such as webinars, regional and national conferences, Awareness Week and printed and online materials.
  • Volunteer Recruitment & Management – Recruit, empower and manage community volunteers.
  • Event Support – Provide in-person event support for events such as a National Conference, Gala and other grassroots educational, peer support and fundraising events.
  • Fundraising – Manage and expand staff-driven and volunteer-driven in-person & virtual fundraising activities.
  • Marketing & Social Media – Create graphics, update website, post on social media and send mass emails.
  • Administration – data entry, meeting minutes, scheduling meetings, etc. as needed.
  • Other responsibilities that are mutually agreed upon as promoting the mission of Pheo Para Alliance


  • Bachelors (Preferred)
  • Fundraising, event planning, community engagement, public health: 2 years (Preferred)
  • Exceptional communication skills with the ability to inspire and motivate donors and volunteers in person, on the phone, in written materials, and on social media.
  • Strong organizational and time management skills with the ability to work independently and handle multiple projects simultaneously.
  • Emotionally intelligent, a good listener, and has empathy for the challenges faced by the pheo para community
  • Experience in/willingness to learn platforms such as DonorSnap, Canva, WordPress, Constant Contact & others.
  • A high degree of professionalism, ethics, passion, industriousness, creativity, and a can-do attitude.

EEOC Statement
Pheo Para Alliance believes in a diverse environment and is committed to equal employment opportunity. We do not discriminate in recruitment, hiring, any other employment practices for reasons of race, color, gender, religion, national origin, gender identity, age, sexual orientation, marital or veteran status, disability, or any other legally protected status.