Position Overview
The Manager, Patient Education & Events leads the development and delivery of Cure HHT’s educational programming and community event experiences that inform, empower, and connect the HHT community.
This role designs and executes both virtual and in-person educational initiatives — including webinars, patient conferences, and learning resources — that transform medical information into accessible, actionable knowledge for patients, caregivers, and healthcare providers.
The Manager partners cross-functionally with the Senior Manager, Community Engagement, the Marketing & Communications team, as well as with Research, Clinical, and Philanthropy teams, to create a unified, mission-driven approach that amplifies awareness, strengthens trust, and deepens engagement.
Key Responsibilities
Educational Strategy and Program Development
- Develop and implement a comprehensive annual education plan that advances Cure HHT’s mission to Find, Treat, and Cure through accessible and relevant learning opportunities.
- Design and produce webinars, virtual workshops, and online educational series tailored to patients, caregivers, and providers.
- Collaborate with medical experts, the Scientific Advisory Board, and internal teams to ensure accuracy, clarity, and accessibility of educational content.
- Partner with the Marketing and Communications team to translate complex information into engaging, easy-to-understand learning materials.
- Evaluate the effectiveness of educational programs using participation metrics, feedback surveys, and impact assessments.
- Collaborate with clinical experts, the Scientific Advisory Board, and the Senior Manager, Community Engagement to develop accurate, accessible, and patient-centered educational materials, webinars, and conference sessions that meet the needs of the HHT community.
- Revamp and reimagine regional patient conferences, offering new and engaging formats, and driving increased community participation across the U.S.
Event Management and Experience Design
- Lead the planning, coordination, and execution of Cure HHT’s National and Regional Patient and Physician Conferences, ensuring exceptional program quality and participant experience.
- Plan and deliver regional patient events that expand access to education and strengthen local community ties.
- Manage event logistics, budgets, vendors, speakers, and volunteers, ensuring seamless coordination across departments.
- Collaborate with the Senior Manager, Community Engagement, to feature community voices, patient stories, and ambassador participation in events.
- Partner with the Philanthropy team to integrate recognition opportunities and sponsor visibility, ensuring all sponsor content is consistent with brand and mission guidelines (without managing direct solicitations).
Content and Resource Development
- Collaborate with HHT clinical experts and oversee creation and updates of educational resources, including brochures, toolkits, guides, and digital learning materials for patients, families, and providers.
- Collaborate with the Marketing and Communications team to maintain an engaging and accurate education section of the Cure HHT website.
- Audit and update educational resources and incorporate new and timely information in a rapidly growing environment translating to diverse communities.
- Identify new topics, tools, and delivery formats to enhance accessibility and engagement for diverse audiences.
- Ensure all materials reflect Cure HHT’s voice, branding, and commitment to diversity and inclusion.
Collaboration and Partnership Building
- Work closely with the Senior Manager, Community Engagement to align educational content with community needs and emerging trends.
- Partner with the Director of Research and clinical experts to coordinate research roundtables, provider workshops, and participation in industry and medical conferences.
- Serve as a key liaison for Cure HHT’s participation in external conferences such as NORD, ASH, and Rare Disease Week, supporting brand visibility and thought leadership.
- Build and maintain relationships with industry associations, professional societies, and allied organizations to expand Cure HHT’s reach, enhance educational programming, and foster collaborative partnerships.
- Collaborate with cross-functional teams (Marketing, Philanthropy, Research, Programs) to ensure educational initiatives align with broader organizational goals.
- Represent Cure HHT as a knowledgeable ambassador at patient and professional events, fostering collaboration and trust within the rare disease community.
- Capture and apply key learnings from external conferences, collaborations, and peer organizations to strengthen Cure HHT’s educational programming, ensuring content remains current, relevant, and responsive to community and clinical advancements.
Measurement, Evaluation, and Reporting
- Track and report participation, satisfaction, and impact metrics for all educational programs and events.
- Use data insights to identify gaps and opportunities to expand reach and improve quality.
- Maintain accurate records in Salesforce or similar CRM to support evaluation, reporting, and strategic planning.
- Partner with the Marketing and Philanthropy teams to develop post-event impact summaries and communication materials for stakeholders and donors.
Requirements
Qualifications
Required
- Bachelor’s degree in Public Health, Education, Event Management, Communications, or related field
- 3–5 years of experience managing educational or event programs within a nonprofit, healthcare, or rare disease organization
- Proven experience planning and executing large-scale conferences or virtual education programs
- Strong organizational and project management skills, with the ability to manage multiple deadlines and priorities
- Excellent written and verbal communication skills, with the ability to translate complex topics into accessible language
- Proficiency in event and digital engagement platforms (Zoom, WordPress, Classy, Salesforce, or equivalents)
- Demonstrated ability to work cross-functionally and build relationships with diverse stakeholders
Preferred
- Experience working directly with patients, caregivers, or medical professionals in rare disease or chronic illness settings
- Experience in content development and instructional design for adult learning or patient education
- Familiarity with sponsorship management and event production best practices
- Master’s degree in a relevant field a plus
Core Competencies
- Educator Mindset: Communicates complex medical information with empathy and clarity.
- Organizer & Planner: Executes multiple projects with precision and attention to detail.
- Collaborator: Builds partnerships across teams and with external stakeholders.
- Data-Informed: Uses feedback and metrics to guide program growth and impact.
- Mission-Driven: Deeply committed to improving outcomes for individuals and families affected by HHT.
Benefits
Compensation and Benefits
Cure HHT offers a competitive salary commensurate with experience, medical, dental, vision benefits, generous PTO, remote work, and opportunities for professional development and leadership growth in a dynamic, mission-driven organization.