Senior Director, Patient Engagement and Education, Sjögren’s Foundation

Location:

Reston, VA (HQ) or Hybrid | Remote considered for exceptional candidate.

The Senior Director, Patient Engagement and Education provides strategic leadership for the Sjögren’s Foundation’s patient engagement, patient education, volunteer, and patient support initiatives. The role develops and executes a comprehensive strategy that strengthens education and support, expands meaningful volunteer engagement across multiple channels, enhances the patient experience, and ensures the patient voice and lived experience are represented throughout the Foundation’s work.

This role is key to activating volunteers to successfully drive change for the Sjögren’s Community and to ensuring that all volunteers feel valued for their participation.

Serving as the Foundation’s subject matter expert on patient engagement, education, volunteerism, and patient experience, the Senior Director works across the organization to integrate the patient voice into programs, healthcare professional education, research, advocacy, and industry collaborations. The Senior Director leads a growing portfolio of patient-facing programs (including U.S. support volunteers and groups, two annual conferences, general volunteer program); manages staff and budgets;

identifies funding opportunities; builds strategic external relationships; and establishes measurable goals to evaluate impact and guide continuous improvement.

Manages 2–3 direct reports responsible for patient support, patient membership program, patient education and conferences, and volunteer opportunities at the Foundation. Coaches, develops, mentors, and evaluates staff while building a collaborative, accountable, high-performing team.

• Strategic Leadership
• Develop and execute a comprehensive patient engagement and education strategy aligned with the Foundation’s mission, strategic plan, and organizational priorities.
• Provide strategic leadership for patient education, support, volunteer engagement, and other patient-facing programs; establish short- and long-term goals for quality, growth, sustainability, and innovation.
• Serve as the organizational expert on patient engagement and experience, collaborating across departments to meaningfully incorporate the patient voice and lived experience into appropriate Foundation programs and initiatives.
• Patient Education
• Lead development and expansion of education that improves understanding of Sjögren’s disease, its systemic manifestations, disease management, and available resources.
• Oversee patient conferences, and other patient-facing educational initiatives; collaborate with Marketing department, healthcare professionals, researchers, and subject matter experts.
• Ensure education reflects current scientific evidence, clinical expertise, patient lived experience; identify emerging needs and use feedback, participation data, and outcomes to improve programs.
• Patient Engagement and the Patient Voice
• Develop strategies and meaningful opportunities for diverse patient experiences to inform Foundation education, healthcare professional education, research, advocacy, industry initiatives, and other appropriate programs.
• Establish a framework to match patient volunteers with opportunities based on experience, knowledge, skills, interests, and program needs, with appropriate preparation, training, resources, and support.
• Ensure patient engagement is meaningful, mission-aligned, and appropriately represents the range of experiences of people living with Sjögren’s.
• Volunteer Strategy and Oversight
• Provide strategic leadership for the Foundation’s volunteer program and experience, including a Foundation-wide framework for recruitment, selection, onboarding, training, engagement,…