Summary
Description
About the Hairy Cell Leukemia Foundation
The Hairy Cell Leukemia Foundation (HCLF) is the only non-profit organization with a global reach dedicated solely to hairy cell leukemia. HCLF funds research, provides a range of education and support to patients and their families, and convenes the world’s leading HCL experts to promote cooperation and collaboration in the field. The HCLF has developed an international patient data registry to address unanswered questions in HCL. In 2020, HCLF announced a 5-year, up to $10 million research initiative in partnership with the LLS. Through HCL2025 and the patient data registry, the HCLF supports new research to improve understanding of HCL, develop additional therapies, and optimize patient outcomes.
What is Hairy Cell Leukemia?
Hairy cell leukemia (HCL) is a rare blood cancer that infiltrates the blood marrow, spleen, and other organs. First described in the late 1950s, HCL is characterized by overgrowth of abnormal white blood cells that compromise the production of normal blood cells. HCL is named for the unique hair-like projections on the surface of these blood cancer cells. Approximately 1,000 patients are diagnosed each year in the United States.
The Program Coordinator position
The HCLF seeks a highly motivated and engaged full-time Program Coordinator. The program coordinator will collaborate with HCLF team members and volunteers to deeply integrate diversity, equity, and inclusion (DEI) across our patient-focused research programs. The program coordinator will support the HCLF in building and implementing best practices to ensure consistent and responsive community engagement around research and ensure community engagement practices align with the needs of our patient network. The program coordinator will co-develop and co-lead focused DEI activities alongside HCLF team members and volunteers.
Responsibilities
Administrative and Logistical Support
- Organize, coordinate, and facilitate relevant programming, including recruiting speakers and developing meeting agendas to achieve the goals of the HCLF’s DEI-focused activities.
- Collaborate with the Executive Director and other team members to establish and support advisory groups to engage diverse patients.
- Collaborate with the Executive Director to manage opportunities for team members, volunteers, committee members, and research grantees to engage and learn from each other in roundtables, panels, and conference sessions.
- May supervise interns and consultants.
Data Analysis and Reporting
- Work collaboratively with team members to evaluate focus group feedback.
- Create internal and external surveys to gauge the patient network.
- Partner with team members to identify goals, tactics, and metrics supporting inclusive community engagement practices aligned with the mission and vision of the HCLF.
Communications
- Contribute to an integrated DEI-focused communications plan aligned with HCLF’s mission, programs, and policies.
- Provide oversight of incoming communications, triaging and responding to relevant questions from patients and families.
- Proactively review online and print communications to ensure inclusiveness and work with team members to act as appropriate.
- Project manage the development of effective and timely external communications, ensuring inclusiveness and responsiveness to the HCLF’s diverse patient population.
- Research, develop, write, edit, proofread, and collaborate with team members to disseminate a full range of communications materials, including website content, pamphlets, and other information about HCL and HCLF research initiatives.
- Track the effectiveness of communications regularly through feedback loops and metrics, then refine the materials using those insights to maximize the efficacy.
- Research DEI-related topics in preparation for presentations, communications, and educational seminars.
- When necessary, represent the HCLF at external conferences and meetings and build external connections.
Qualifications
- A bachelor's degree in the education and nonprofit sectors or a related field, plus 6 to 10 years of experience, or an equivalent combination of education, training, and experience.
- Training, experience, or certification in diversity, equity, and inclusion (DEI) is a plus but not required.
- Personal or professional experience in hairy cell leukemia or rare disease is preferred.
- Experience in community organizing and membership organizations or a related field.
- Experience or background in meeting facilitation.
- Basic proficiency in MS Office 365 (Microsoft Word, PowerPoint).
- Familiarity with social media platforms or willingness to learn new technologies.
- Strategic thinking and planning skills.
- Excellent listening and communication skills.
- Strong writing and research skills.
- Commitment to values of diversity, equity, and inclusion and ensuring broad and diverse access to evidence-based information and research for all patients with a rare disease.
- An open mind and respect for others.
- Research has the power to transform the field of medicine in HCL and improve patient outcomes. By raising awareness of HCL research opportunities among diverse patients, including people of color with HCL, we can deepen our insights into the disease. We are committed to promoting diversity and inclusion in HCL research and registry initiatives and welcome applications from people of color with HCL for this position.
Location
This role is remote and can be based anywhere in the United States.
Occasional travel will be required to attend meetings and conferences.
Application instructions
To apply, please send a detailed letter of interest and current resume or CV to info@hairycellleukemia.org.
Submit your application by March 31 for priority consideration.
Target start date: June 1, 2024 or earlier.
The position is open until filled.
Salary and Benefits
Salary range: $45,000-60,000 per year
This range is an estimate of the base pay range for this position. Pay is based on several factors, which may include job-related knowledge, skills, and experience.
Benefits include a 401K plan, paid-time-off policy, paid holidays, and a strong organizational commitment to work-life balance.
The program coordinator role is a full-time, two-year position with possibility of extension, depending on funding.
