MISSION STATEMENT: The Hemophilia Federation of America (HFA) is a non-profit 501(c)(3) organization incorporated in 1994 to address the evolving needs of the bleeding disorders community. We serve as a consumer advocate for safe, affordable, and obtainable blood products and health coverage, as well as a better quality of life for all persons with bleeding disorders.

HFA VALUES: We believe in the following values and look to all employees to act as servant leaders to engage with:

• Trust – We are confident in our mission and one another.
• Integrity – We are ethical and honest at all times.
• Community – We work together to be our best selves.
• Respect – We embrace our differences.
• Creativity – We seek better ways to achieve results.
• Flexibility – We adapt as needed to remain focused on priorities and results.
• Fun – We celebrate our success.

JOB DESCRIPTION:

In this role, the Health Equity and Community Engagement Director will support HFA’s mission by creating and implementing a comprehensive plan to expand HFA’s policy and advocacy outreach and engagement efforts with a particular focus on groups of people who face disparities in access to care, coverage and treatment within the bleeding disorders patient population. The Director will utilize outside research data, HFA-led needs assessments and best-practice stakeholder engagement strategies to advance SMART goals, including efforts to foster inclusivity and integration of the full bleeding disorder community into HFA’s policy and advocacy engagement strategies. Additionally, this role will be a DEI subject matter expert who will be the project lead of HFA’s Bleeding Disorders Health Disparities Council and support the Policy & Advocacy team in advocacy, legislative and regulatory analysis through a health equity lens. Responsibilities include, but are not limited to:

RESPONSIBILITIES:

• Collaborate with Advocacy Director to identify, recruit, engage, and connect community advocates to the Advocacy Network, HFA advocacy opportunities, HFA educational resources and programs, and to local member organizations.
• Collaborate with the Policy Director to track, research, and analyze legislation and regulation that may impact people living with bleeding disorders, with a particular focus on analysis regarding health equity.
• Lead HFA engagement in select state and/or national coalitions; Develop and maintain relationships with professional associations/coalitions and state/national patient advocacy groups to identify opportunities for collaboration, and represent HFA’s commitment to health equity and guide stakeholder engagement as needed/applicable.
• Provide HFA member organization support and foster active engagement to deploy successful HFA projects, programs, and initiatives nationally that drive inclusive community engagement locally. Communicate legislative and regulatory developments, HFA policy positions, and advocacy activities to the membership and grassroots networks, including writing articles, op-ed pieces, advocacy issues briefs, as well as presentations and webinars to member organizations and potentially with like-minded organizations.
• Assist in planning and staffing HFA annual Symposium and annual Advocacy Retreat. Assist with HFA federal policy and regulatory efforts.
• Other duties as assigned.

Key Results:

• Create and manage an annual plan for HFA’s health equity and community engagement work, to include stakeholder mapping, cross-department collaboration, and potential for state/national legislative impact.

• Identify and engage bleeding disorder community stakeholders including but not limited to patients, healthcare providers, coalition partners, and member organization staff/leadership to guide aspects of HFA’s health equity efforts through an advisory body and working group/s supporting annual plan strategies.
• Lead all efforts of the Bleeding Disorders Health Disparities Council, including recruitment and retention of membership, regular Council communications, a two-year Council strategy plan.
• Lead efforts to integrate a health equity lens and awareness with HFA member organizations by preparing and delivering presentations in annual HFA-hosted programs including but not limited HFA Symposium PreConference, Meeting of the Minds, IMPACT, and in collaboration with member organizations during annual Stakeholder meetings.
• Design and develop simple community survey and data collection tactics that enhance ongoing community-centered insights to barriers to care and support and convey the types of disparities faced by patients with bleeding disorders to inform HFA’s policy priorities and advocacy engagement.

QUALIFICATIONS:

• Bachelor’s degree is required; advanced degree in public policy, public health, community health, or diversity, equity and inclus
• A minimum of 5-7 years of community engagement, policy and advocacy experience, in health-related issues.
• Knowledge about social determinants of health, diversity, equity and inclusion principles and practices; historical constructs of racism and oppression and how they impact health and well-being.
• Proven understanding of key trends affecting patient engagement. Expertise in facilitation and stakeholder engagement.
• Possess outstanding skillset of public speaking/presenting/training, professional writing and editorial, and grassroots/ social media communication skills

BENEFITS AVAILABLE:

• Health, Dental, and Vision Insurance
• 403(b) Retirement Savings Plan
• Basic Life Insurance
• Short/Long Term Disability Insurance
• Employee Assistance Program (EAP)
• Vacation & Holiday Pay
• Professional Development reimbursement

Equal Opportunity Employer committed to diversity in the workplace.