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!
The FH Foundation is the leading organization in the U.S. dedicated to awareness, education, and advocacy for Familial Hypercholesterolemia (FH), elevated Lipoprotein(a) (Lp(a)) and polygenic hypercholesterolemia. These are common, but under-diagnosed, genetic disorders that can lead to early, aggressive cardiovascular disease in men, women, and even children. The FH Foundation’s mission is to raise awareness through research, advocacy, and education. Our goal is to save lives by increasing the rate of early diagnosis and encouraging proactive treatment.
Reporting to the Vice President for Policy and Outreach, the Community Outreach Coordinator will engage, mobilize and support individuals and families affected by inherited lipid disorders. This person will also work with the leadership and development staff on community fundraising efforts, specifically the annual Race for FH and Lp(a) fundraiser. The Community Outreach Coordinator will work with the FH Foundation team to track and report on program performance.
Working with and reporting to the VP for Policy and Outreach:
- Engage, mobilize, and support a growing FH Foundation community.
- Organize events including an annual FH Advocates for Awareness Training, Lp(a) Advocates Training, Capitol Hill Day, HoFH Family Meeting, Community Forums, and other opportunities that contribute toward the advancement of the FH Foundation’s mission.
- Manage volunteers, including but not limited to, FH and Lpa(a) 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 communications, medical, and community leadership to 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.
- Help to develop and implement email education and engagement campaigns and follow-up for individuals and family members with all forms of FH.
- 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.
- Receive and track requests for information and support and related follow up. Ensure that requests are directed to the appropriate team members.
- 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.
- Requests assistance as needed to accomplish goals, meet deadlines and implement new processes.
- 2-5 years of relevant work experience, including experience organizing community initiatives and managing volunteers.
- Bachelor’s degree required. Master’s degree preferred.
- 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 team members.
- Ability to work collaboratively in a team environment.
- Experience with Client Relationship Management software (SalesForce) strongly preferred.
- Ability and willingness to travel as required, as well as ability to work evenings and weekends as needed.
- Position is a hybrid of remote and in-person.
- Position is based in Arlington, VA.
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.