Community Programs & Education Manager

About Cure HHT:

Cure HHT is a non-profit organization committed to raising awareness, funding research, catalyzing scientific and medical advancements, and providing resources for patients and families affected by Hereditary Hemorrhagic Telangiectasia (HHT). We aim to empower individuals living with HHT by providing education, support, and advocacy, helping them live healthier lives while working towards a cure.

Job Overview:

The Community Programs & Education Manager will play a pivotal role in strengthening Cure HHT’s community education and support programs. This role will focus on developing and executing a comprehensive education program strategy – which includes developing a suite of virtual educational and support program offerings, leading the development of national patient conferences with more than 500 attendees, producing educational resources that will empower individuals living with HHT. This role is tasked with ensure Cure HHT remains and further positions itself as the cornerstone of the HHT community, perceived as an invaluable resource, connector and support system by those impacted by the disease. The Community Programs & Education Manager will also lead our legislative advocacy efforts, enhancing our outreach to both patients and volunteers, and increasing engagement with key stakeholders.

Key Responsibilities:

1.    Virtual Education Strategy

• Develop and implement a comprehensive virtual education strategy, including a calendar of webinars, virtual conferences, online workshops, tailored educational offerings for segmented and unique audiences, and other educational programming.
• Create, curate, and oversee content development for virtual platforms, ensuring it is engaging, informative, and meets the needs of patients, caregivers, and the broader HHT community.
• Facilitate and host virtual support groups for patients and caregivers, ensuring a safe, supportive, and educational environment that fosters meaningful connection.
• Measure and analyze impact of events to drive community engagement.

2.    National & Regional Patient Conferences

• Lead the planning and execution of Cure HHT's national patient conferences, ensuring all logistical, programmatic, sponsorship, and engagement aspects are well-coordinated.
• Collaborate with Director of National Coordinating Center to plan and execute health care provider continuing medical education programs, conferences and collateral
• Lead efforts to grow sponsorship and support of events and offerings, through individual contributions from patients, hospitals, and pharma.
• Revamp and reimagine regional patient conferences, offering new and engaging formats, and driving increased community participation across the US.
• Work closely with speakers, facilitators, and volunteers to ensure a meaningful experience for attendees

3.    Educational Resource Development

• Oversee the creation and distribution of educational resources (e.g., brochures, guides, online content) for patients, caregivers, and healthcare providers.
• Ensure that resources are up-to-date, accessible, and available in a variety of formats.
• Collaborate with the medical advisory board and experts to ensure content accuracy and relevance.

4.    Research & Healthcare Provider Events

• Collaborate with Director of Research to coordinate research roundtable and other provider-specific sessions, in addition to working together to develop recap information from relevant publications, events and conferences.
• Lead efforts for organization’s involvement in industry and specialty conferences, like American Society of Hematology (ASH), National Organization for Rare Disease (NORD), etc.

 5. Legislative Advocacy & Volunteer Engagement

• Lead and coordinate Cure HHT’s legislative advocacy program, with a focus on Capitol Hill days and other advocacy events.
• Develop outreach strategies to increase awareness of HHT-related legislation and mobilize volunteers, patients, and stakeholders to advocate for HHT research funding and policy changes.
• Coordinate all logistics for advocacy events, including training volunteers, securing meeting spaces, and handling communications with legislators and their teams.
• Grow volunteerism by developing strategic initiatives to engage and retain community volunteers for advocacy efforts.

6.    Collaboration & Community Building

• Collaborate with cross-functional teams within Cure HHT to align educational offerings with other organizational goals, particularly development and fundraising.
• Build relationships with healthcare providers, HHT experts, and community leaders to ensure comprehensive support and education for patients and families.
• Represent Cure HHT at relevant events, conferences, and public forums to increase the visibility of HHT and advocate for the needs of the community.

Qualifications:

• Bachelor's degree in public health, education, event management, social work, communications, or related field; Master’s degree preferred.
• 3-5 years of experience in community program management, patient advocacy, or nonprofit management, preferably within the healthcare or rare disease space.

Requirements

• Passion for social impact and supporting a growing nonprofit to support and save lives among its patient community.
• Ability to prioritize multiple projects at once, an organized self-starter who is able to deliver on key deadlines.
• Strategic thinker and self-starter who can bring new-to-world ideas to the role and Cure HHT's educational offerings.
• Experience with Salesforce, Classy, Wordpress.

Benefits

This is a full-time, remote position, although individuals living in Maryland are encouraged to work from the office location 2-3 days per week if possible. Applicants must reside in the United States and be able to work during normal business hours on Monday-Friday. Full-time employees are eligible to receive a comprehensive benefits package, including holidays, paid time-off, health insurance (covering medical, dental, prescription drugs, and both short and long-term disability), as well as the option to participate in a 403(b) plan with company matching after meeting the eligibility criteria.

Cure HHT is an equal opportunity employer dedicated to diversity, equity, and inclusion in all its activities and programs. Cure HHT does not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military status, in any of its activities or operations.

Learn more about HHT and the mission of the organization by visiting our website at www.curehht.org.