Volunteer Job
Opportunities
In order to help more families and individuals and raise greater awareness of HLH, we need more volunteers! We invite you to share your time with us to help us keep our efforts strong. Learn how you can support our mission by applying to one of the below volunteer positions or complete our volunteer form below and we will help you find a special place in the foundation. As the HLH Heroes Foundation operations are limited to the United States, at this time we are only able to have volunteers based in the United States.
Caring Companion Coordinator
Location: Remote
Time Commitment: 2-3 hours per month for at least 1 year.
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Role Overview
The Caring Companion Coordinator serves as the primary link between families navigating a new diagnosis and our network of dedicated volunteers for our Caring Companion program. This role ensures that no family walks their journey alone by facilitating timely, thoughtful, and organized connections with a Caring Companion.
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Responsibilities
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Family Outreach: Initiate contact with newly diagnosed families via email, providing them with the necessary intake forms to understand their specific needs.
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Workflow Monitoring: Track the status of pending forms and ensure families have the support they need to complete the onboarding process.
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Volunteer Matching: Review family profiles and strategically reach out to the volunteer pool to facilitate a meaningful connection.
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Record Keeping: Maintain an accurate, up-to-date database of family-volunteer pairings to ensure no one falls through the cracks.
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Follow-up & Support: Regularly check in with volunteers to confirm contact has been established and monitor the ongoing health of the connection.
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Qualifications & Skills
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Strong Communication: Ability to communicate with warmth, clarity, and professionalism via email and phone.
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Organizational Excellence: High attention to detail with the ability to manage multiple moving parts and "close the loop" on tasks.
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Technical Proficiency: Comfortable using email platforms, digital forms, and basic database or spreadsheet management (e.g., Excel, Google Sheets, or CRM tools).
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Empathy & Discretion: Ability to handle sensitive family information with the utmost confidentiality and compassion.
Marketing and Social Media Coordinator
Location: Remote
Time Commitment: 2-3 hours per month for at least 1 year.
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Role Overview:
We are looking for a creative and motivated Marketing and Social Media Coordinator to help amplify our mission and engage our community. This volunteer position is essential for developing and executing marketing strategies that raise awareness about our work supporting families impacted by a rare disease.
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Responsibilities:
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Social Media Management: Create, schedule, and post engaging content across various platforms (Facebook, Instagram, etc.) to increase awareness and engagement.
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Content Creation: Develop compelling graphics, videos, and written content that highlights our programs, events, and success stories.
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Campaign Development: Plan and execute targeted marketing campaigns to promote fundraising events, awareness initiatives, and community engagement activities.
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Community Engagement: Interact with followers, respond to inquiries, and foster a sense of community online.
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Analytics and Reporting: Monitor social media metrics and website analytics to evaluate the effectiveness of marketing strategies and provide insights for improvement.
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Collaboration: Work closely with other team members to align marketing efforts with organizational goals and initiatives.
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Qualifications:
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Experience: Previous experience in marketing, social media management, or communications, preferably in a non-profit context.
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Creative Skills: Strong writing, graphic design, and content creation skills; familiarity with design tools (e.g., Canva) is a plus.
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Tech Savvy: Proficiency in using social media platforms and tools, as well as basic knowledge of website management (e.g., Wix).
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Communication Skills: Excellent interpersonal and communication skills, with the ability to engage diverse audiences.
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Passion for the Mission: A genuine commitment to supporting families affected by rare diseases and raising awareness in the community.
Board Member
Volunteer
Location: Remote
​​Position Summary:
The Board Members plays a critical role in guiding the HLH Heroes Foundation’s growth, ensuring strong governance, and advancing its mission to support HLH families. We are seeking a dedicated board member with professional expertise in accounting to strengthen the organization’s compliance, financial stewardship, and long-term sustainability.
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Key Responsibilities
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Provide oversight aligned with the foundation’s mission of supporting individuals and families impacted by HLH
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Contribute to strategic planning as the organization expands programs and geographic reach
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Ensure adherence to bylaws, policies, and ethical standards
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Review and approve financial statements, budgets, and annual filings
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Ensure appropriate financial controls and transparency for a growing nonprofit
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Support responsible stewardship of donor funds used for direct family support programs
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Provide insight into sustainable growth of support programs (financial aid, care packages, community-building efforts)
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Help evaluate program effectiveness and impact for HLH families
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Act as an ambassador to raise awareness of HLH and the foundation’s work
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Support fundraising efforts through connections, events, and donor engagement
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Contribute to a culture of philanthropy and resource development
Board Engagement
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Attend and actively participate in board meetings (quarterly or as determined)
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Serve on a committee, if desired
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Preferred Qualifications:
Accounting (e.g., CPA, auditor, financial management) (Preferred Expertise)
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Accounting professionals: support financial reporting, IRS compliance (501(c)(3)), audits, and internal controls
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Legal professionals: advise on nonprofit governance, regulatory compliance, contracts, and risk management
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Help ensure compliance with federal and state nonprofit regulations
Qualifications
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Interest in or commitment to rare disease advocacy, healthcare support, or family services
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Understanding of nonprofit governance, financial stewardship, or regulatory requirements
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Strong analytical, ethical decision-making, and collaborative skills
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Willingness to contribute time, expertise, and professional perspective to a growing organization
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Prior board experience is helpful but not required
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Time Commitment
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Attend approximately 5 board meetings annually
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Participate in committee work and occasional special initiatives if desired
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Term Length
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2 years with potential for renewal in 1 year increments
Board Member
Volunteer
Location: Remote
​​Position Summary:
The Board Members plays a critical role in guiding the HLH Heroes Foundation’s growth, ensuring strong governance, and advancing its mission to support HLH families. We are seeking a dedicated board member with professional expertise in law to strengthen the organization’s compliance, financial stewardship, and long-term sustainability.
​
Key Responsibilities
-
Provide oversight aligned with the foundation’s mission of supporting individuals and families impacted by HLH
-
Contribute to strategic planning as the organization expands programs and geographic reach
-
Ensure adherence to bylaws, policies, and ethical standards
-
Review and approve financial statements, budgets, and annual filings
-
Ensure appropriate financial controls and transparency for a growing nonprofit
-
Support responsible stewardship of donor funds used for direct family support programs
-
Provide insight into sustainable growth of support programs (financial aid, care packages, community-building efforts)
-
Help evaluate program effectiveness and impact for HLH families
-
Act as an ambassador to raise awareness of HLH and the foundation’s work
-
Support fundraising efforts through connections, events, and donor engagement
-
Contribute to a culture of philanthropy and resource development
Board Engagement
-
Attend and actively participate in board meetings (quarterly or as determined)
-
Serve on a committee, if desired
​
Preferred Qualifications:
Legal & Compliance Guidance (Preferred Expertise)
-
Professional experience in law (e.g., attorney, nonprofit compliance, governance)
-
Legal professionals: advise on nonprofit governance, regulatory compliance, contracts, and risk management
-
Help ensure compliance with federal and state nonprofit regulations
Qualifications
-
Interest in or commitment to rare disease advocacy, healthcare support, or family services
-
Understanding of nonprofit governance, financial stewardship, or regulatory requirements
-
Strong analytical, ethical decision-making, and collaborative skills
-
Willingness to contribute time, expertise, and professional perspective to a growing organization
-
Prior board experience is helpful but not required
​
Time Commitment
-
Attend approximately 5 board meetings annually
-
Participate in committee work and occasional special initiatives if desired
​
Term Length
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2 years with potential for renewal in 1 year increments
Fundraising Support Volunteer
Location: Remote
Time Commitment: 4-5 hours a month for 1 year
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Role Overview:
Join our team as a Fundraising Support Volunteer to help us secure essential resources for families, individuals, and children affected by a rare disease (HLH). This remote position is perfect for individuals who enjoy organizing events and building relationships.
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Responsibilities:
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Assist in the planning and execution of fundraising campaigns and events.
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Research potential grant opportunities and assist with grant applications.
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Help develop promotional materials to communicate fundraising efforts.
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Engage with donors and supporters through email updates and thank-you notes.
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Collaborate with the team to brainstorm new fundraising ideas.
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Qualifications:
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Strong organizational and communication skills.
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Experience in fundraising, event planning, or marketing is desirable.
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Proficiency in Microsoft Office or Google Workspace.
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A passion for our mission and dedication to making a difference
