Community Outreach Coordinator FH (Familial Hypercholesterolemia) Foundation

Location: Remote / Arlington, VA
Reports to: Vice President for Policy and Outreach

Are you excited by the opportunity to prevent heart disease in families that are impacted across multiple generations? Are you motivated by being on the cutting edge of improving healthcare – including public health, genomics, patient-centeredness, and implementation research? If you are ready to be part of a dynamic team helping people live longer, healthier lives, then the FH Foundation is the place for you!

Reporting to the Vice President for Policy and Outreach, the Community Outreach Coordinator will support the implementation of the FH Community in Action and other programs. The role includes scheduling and tracking community and grass-roots awareness and education activities both on- and off-line. In addition, this role will also work with the leadership and development staff on community fundraising efforts, specifically the annual Race for FH fundraiser. The Community Outreach
Coordinator will work with the FH Foundation team to track and report on program performance.

The FH Foundation is the leading organization in the U.S. dedicated to awareness, education, and advocacy for Familial Hypercholesterolemia (FH). FH is a common, but under-diagnosed, genetic disorder that causes extremely high cholesterol from birth. If left untreated, FH leads to aggressive cardiovascular disease in men, women, and even children. The FH Foundation’s mission is to raise awareness of FH through research, advocacy, and education. Our goal is to save lives by increasing the rate of early diagnosis and encouraging proactive treatment.

Principal Duties And Responsibilities

Working with and reporting to the VP for Policy and Outreach:

  • Engage, mobilize, and support volunteers across the US in FH Foundation awareness-raising and fundraising activities.
  • Organize events including an annual FH Advocates for Awareness Training and Capitol Hill Day, HoFH Family Meeting, FH Global Summit Community Forum, and other opportunities that contribute toward the advancement of the FH Foundation’s mission.
  • Manage volunteers, including but not limited to, FH Foundation Advocates for Awareness. Recruit, train, mobilize, and support volunteers. Develop additional opportunities for volunteers to engage in awareness-raising and fund-raising efforts. Support volunteers to carry out their own initiatives in their local communities. Track and report on activities, including creating content related to these activities for the website and social media channels.
  • Working with the VP for Marketing and Communications and the Chief Medical Officer, assist with the research, development, drafting, and proofreading of important news and content for the FH Community for social media and the website via social media posts, blog posts, and newsletter content. Assist with developing content for FHF social media including Facebook, Twitter, LinkedIn and Instagram.
  • Together with the team, help identify educational needs and assist in the production and
    dissemination of educational materials aimed at both individuals with FH and healthcare providers.
  • Track requests for information and support and related follow up.
  • Help to develop and implement email education and engagement campaigns and follow-up for individuals and family members with all forms of FH.
  • Support the VP for Policy and Outreach in advocacy efforts with FDA, Capitol Hill, CDC, and others.
  • Plan and coordinate monthly volunteer meetings, agendas, and activities. Prepare
    presentations, materials, and reports for volunteer activities.
  • Work independently and with the team to plan and track project timelines and tasks, and report on program metrics and deliverables.
  • Manage the FH Foundation Client Relationship Manager (CRM), tracking response and follow up to outside inquiries, including maintaining the FH Specialist Map database.
  • Schedule and help prepare for calls and meetings for the FH Foundation team.
  • Maintain program files (digital and paper) according to FH Foundation policies.


  • 2-5 years of relevant work experience, including experience organizing community initiatives and managing volunteers
  • Bachelor’s degree required
  • Ability to prioritize and manage multiple tasks including strong organizational, project management and reporting skills
  • Excellent communication skills – writing, editing and speaking
  • Strong interpersonal skills in working with volunteers, healthcare professionals, policy makers, and staff
  • Ability to work collaboratively in a team environment
  • Experience with Client Relationship Management software (SalesForce)
  • Ability and willingness to travel as required, as well as ability to work evenings and weekends as needed
  • Position is based in Arlington, VA and will initially be remote due to Covid.
  • This is a part-time position with potential for full-time in the future.

More Information

The FH Foundation provides equal employment opportunities to all employees and applicants for employment without regard to race, religion, gender, sexual orientation, national origin, age, disability or genetics. In addition to federal law requirements, the FH Foundation complies with applicable state and local laws governing nondiscrimination in employment.

To apply, please send cover letter, resume, and a most recent writing sample to [email protected] Only applicants whose resumes are selected for an interview will be contacted.


View the full job listing, here.