Director of Data and Technology

To apply, send your resume, cover letter (INCLUDE POSITION NAME), and salary requirements to HR@cholangiocarcinoma.org. All applicants MUST submit a cover letter, resume, and salary requirements to be considered.

Director of Data and Technology

Location: Virtual

Category: Full-time; salaried

FLSA Status: Exempt

Reports to: Chief Financial Officer (CFO)

Position Overview

We are seeking a Director of Data and Technology to oversee the Foundation’s data systems, networks, and technology infrastructure. Reporting to the CFO, this role organizes, stores, extracts, and analyzes data while maintaining the Foundation’s security and confidentiality standards. The Director will develop and implement data collection, retention, and security policies in line with industry best practices, while working closely with staff across the organization to manage and leverage data effectively. Responsibilities include managing all technology systems, providing tech support to all staff members, streamlining data processes, and ensuring secure, efficient information flow. The Director will lead the Foundation’s integrative approach to AI technologies and best practices—including responsible data use, bias mitigation, system governance, and privacy compliance—owning the integration of ethical, innovative AI solutions that support the Foundation’s mission and values.

About Cholangiocarcinoma Foundation

The Cholangiocarcinoma Foundation (CCF) is the only U.S.-based nonprofit organization solely focused on cholangiocarcinoma (bile duct cancer), a rare but aggressive disease that affects approximately 15,000 people annually in the United States. Founded in 2006 in Salt Lake City by a family who lost a loved one to this devastating cancer, CCF has grown into a global leader in patient support, education, advocacy, and research funding.

Driven by its core values—patients first, collaboration, innovation, and urgency—CCF operates in a fast-paced environment, mobilizing resources and expertise worldwide to accelerate progress. As a virtual organization with team members across the U.S. and internationally, CCF connects a global audience of patients, caregivers, clinicians, and researchers through cutting-edge programs and partnerships. The Foundation is recognized for advancing innovative research, championing patient-centered care, and responding with urgency to the needs of a growing and underserved community.

Primary Responsibilities

The essential duties and responsibilities of this position include, but are not limited to, the following areas:

Data Management

• Oversee data collection, storage, management, quality, and protection.
• Develop, implement, and maintain data management policies, procedures, and standards across the Foundation.
• Coordinate with and support the Foundation's Advocacy, Development, Communications, Finance, Operations, and Research functions, especially with data extraction, analysis, report formulation, and technical support.
• Implement data privacy policies and ensure compliance with data protection regulations.

Technology Management

• Provide day-to-day technical support and training to staff, resolving approximately 20 monthly tickets related to hardware, software, and network issues.
• Conduct a comprehensive, cross-functional audit of current IT systems and digital tools to identify integration gaps, reduce redundancies, and improve operational efficiency.
• Manage all the Foundation's technology systems and software platforms, ensuring they are up-to-date, secure, and aligned with operational needs.
• Liaise with vendors and external consultants for technology upgrades and specialized support.
• Monitor trends and solutions in data and technology and implement innovative tools and practices that advance the Foundation’s mission.

AI Innovation

• Partner with the CFO to lead a structured Request for Proposals (RFP) process to identify and engage an external consultant with expertise in AI implementation, ensuring vendor selection aligns with the Foundation’s strategic and technical needs.
• Collaborate with the CFO and external consultant to develop a comprehensive organizational AI strategy and policy that aligns with the Foundation’s mission and incorporates ethical use, data privacy, cybersecurity, and compliance with emerging regulatory standards.
• Identify and evaluate high-impact, practical AI use cases across departments - including reporting automation, workflow optimization, donor engagement, and program impact analysis - and oversee the pilot and phased implementation of selected tools to ensure measurable outcomes and successful staff adoption.
• Provide technical guidance and capacity building to staff by delivering monthly or quarterly training sessions, sharing cross-organizational best practices, and managing the rollout and ongoing execution of the Foundation’s AI strategy and policy.

Skills, Qualifications, Requirements

• Bachelor’s degree in Information Technology, Computer Science, Data Science, or a related field.
• Minimum of 10 years of experience, including 3 years in managerial/leadership roles with independent decision-making.
• Proven experience managing organizational data infrastructure, technology systems, and hardware management.
• Experience supporting staff with IT troubleshooting and training.
• Ability to translate complex problems clearly and in nontechnical terms.
• Strong understanding of cybersecurity best practices, data privacy regulations (e.g., GDPR, CCPA), and compliance.
• Familiarity with enterprise software, cloud services (e.g., Microsoft 365, Google Workspace), and network systems.
• Not required but preferred: experience with Blackbaud Raiser's Edge NXT and Tableau.
• Experience with AI technologies and tools, and understanding of AI governance and ethics. An analytical mindset with superb communication and problem-solving skills.
• Ability to work as part of a team, strong interpersonal skills.
• Ability to travel to Salt Lake City, UT, twice a year.
• Successful completion of a background check.

Work Environment and Physical Requirements

• This full-time, fully remote position requires a dedicated, professional home office environment with reliable internet access.
• The role involves prolonged periods of sitting, working on a computer, attending virtual meetings, and managing digital communications.
• Flexibility to respond to time-sensitive issues during regular business hours, with occasional after-hours availability for urgent matters or events.
• Ability to manage multiple tasks and priorities in a fast-paced virtual environment.

COMPENSATION

Salary Range: $85,000 - $90,000

Benefits include Health insurance (medical, dental, vision), full-paid life and disability insurance, a generous PTO package that includes summer Fridays and a paid winter break, and a 401(k)—additionally, a discretionary annual bonus up to 5%.

LOCATION

The Foundation is a virtual organization. Candidates must reside in the United States and be authorized to work there. The selected candidate will be required to travel as needed.

To apply, send your resume, cover letter (INCLUDE POSITION NAME), and salary requirements to HR@cholangiocarcinoma.org. All applicants MUST submit a cover letter, resume, and salary requirements to be considered.

This job description is not designed to cover or contain a comprehensive listing of activities, duties, or responsibilities that are required of the employee. Duties, responsibilities, and activities may change, or new ones may be assigned at any time, with or without notice. Nothing in this job description alters an employee's at-will status and is meant only as a guide, not a contract of employment.

The Cholangiocarcinoma Foundation's policy provides equal opportunities without regard to race, color, religion, age, gender, sex, national origin, disability, veteran status, or any other characteristic protected by law.