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

Location: 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.

Principal Duties And Responsibilities

Direct Reports: 

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.

1. 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.

2. 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.

3. 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.

4. 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, recognition, retention, and appropriate offboarding.
  • Develop and manage a patient advisory program, with tiered opportunity and training, to serve as strategic patient voices for healthcare education and pharma engagement.
  • Ensure volunteer roles, standards, agreements, confidentiality requirements, records, tracking systems, and risk-management practices are clearly defined and maintained.
  • Develop strategies to expand and recognize volunteer participation while maintaining program quality, appropriate oversight, and alignment with Foundation priorities.

5. Patient Support and Navigation

  • Provide strategic oversight of patient support and navigation, ensuring access to credible, timely, and appropriate Foundation information, resources, support, and services.
  • Oversee support groups, patient support services, online communities, and related programs; identify gaps and emerging needs and ensure services are scalable, consistently delivered, and aligned with Foundation standards.
  • Evaluate utilization, patient feedback, outcomes, and opportunities for improvement with program staff.

6. Healthcare Professional, Research and Advocacy Collaboration

  • Partner with the MedSci team, healthcare professionals, academic institutions, and researchers to advance patient-facing programs and incorporate patient perspectives into appropriate educational initiatives.
  • Collaborate with research staff to support meaningful patient participation in research programs, scientific meetings, Clinical Practice Guidelines, advisory activities, and other initiatives where lived experience adds value.
  • Collaborate with advocacy staff to engage and prepare patients for appropriate federal, state, regulatory, and public-policy activities; ensure patient representatives are appropriately selected, trained, prepared, and supported.

7. Industry Partnerships and Program Funding

  • Develop and manage relationships with pharmaceutical and biotechnology companies in support of patient engagement and education initiatives while maintaining the Foundation’s independence, credibility, policies, and mission alignment.
  • Partner with Corporate Partnership and Development to identify and secure sponsorships, educational grants, contracts, and other program support; develop concepts, scopes, budgets, deliverables, and impact measures.
  • Identify appropriate opportunities for patient participation in industry advisory councils, roundtables, and meetings, maintaining appropriate separation between funding and educational content, patient voice, and programmatic decision-making.

8. Budgeting, Evaluation and Reporting

  • Develop and manage departmental and program budgets; establish annual resource requirements and longer-term staffing/program needs; prioritize resources with organizational leadership and departments.
  • Establish measurable goals, KPIs, impact measures, and dashboards; evaluate participation, effectiveness, outcomes, impact, and where appropriate ROI using quantitative data and patient/volunteer feedback.
  • Prepare strategic updates and impact reporting for the CEO, leadership team, Board of Directors, funders, and other stakeholders; ensure funded programs meet agreed deliverables and reporting requirements.

Qualifications

Required

  • Bachelor’s degree required; Master’s degree in Public Health, Healthcare Administration, Nonprofit Management, Education, or related field preferred.
  • 7–10 years of progressively responsible experience in patient education, patient engagement, patient services, volunteer management, community programs, or related healthcare/nonprofit programs, including at least 4 years of staff management experience.
  • Experience in a healthcare nonprofit, patient advocacy organization, medical association, or related healthcare environment, with demonstrated success developing, implementing, evaluating, and growing patient engagement and/or education programs.
  • Experience collaborating with healthcare professionals amplifying the patient voice. Experience working with pharmaceutical/biotechnology companies on sponsorships, educational grants, patient engagement programs, or program support.
  • Experience managing conferences (virtual and live), webinars, educational meetings, complex projects, cross-functional teams, departmental/program budgets, program metrics, outcomes, and continuous improvement.
  • Excellent written and verbal communication, presentation, relationship-building, strategic planning, project management, and organizational skills;
  • Experience developing scalable national patient or volunteer programs.
  • Ability to manage multiple priorities in a growing organization.
  • Experience with Salesforce or a similar CRM system;
  • Ability to travel up to 20%.

Leadership Attributes:

The successful candidate is a strategic, patient-centered people leader who translates organizational priorities into measurable results; develops scalable programs and manages staff and delegates effectively; builds strong relationships with patients, volunteers, healthcare professionals, researchers, industry partners, colleagues and other stakeholders; collaborates effectively across departments; adapts well in a growing organization; and is committed to the Sjögren’s Foundation’s mission.

More Information

About the Sjögren’s Foundation:

The Sjögren’s Foundation is a patient advocacy organization dedicated to making a significant difference in the lives of people living with Sjögren’s, a serious and systemic autoimmune disease. The Foundation supports and educates patients, provides credible resources and education for healthcare professionals, ensures the patient voice is represented in advocacy, and encourages and funds Sjögren’s research. As advances in research and therapeutic offerings change how Sjögren’s is understood, diagnosed, treated, and managed, this Senior Director will help ensure patients have the education, support, opportunities, and voice needed as the landscape continues to advance.

How to Apply:

Interested candidates should submit a resume and cover letter detailing their qualifications and experience to careers@sjogrens.org. Please include “Senior Director, Patient Engagement and Education” in the subject line.

Equal Opportunity Employer:

The Sjögren’s Foundation is an equal opportunity employer and encourages candidates from diverse backgrounds to apply. We are committed to creating an inclusive environment for all employees.

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