IT Team Lead

IT Team Lead

Rare Genomics Institute (RGI) is a nonprofit organization dedicated to helping rare disease patients find a diagnosis, treatment, and a pathway to a cure.

Through personalized research projects, RGI provides access to world‑leading medical institutions and scientists to conduct genomic sequencing, coordinates with clinicians and counselors to interpret findings, and offers an online crowd‑funding platform to deliver financial solutions. RGI also supports rare disease advocacy by fostering an online community of rare disease patients and supporting rare disease research through a yearly grant competition.

Since being founded in 2011, RGI has completed over 300 genetic sequencing and analysis projects, assisted patients fund over $3.5 million worth of genomic sequencing, discovered eight unique genetic mutations in‑house, given over $2 million dollars in grants to researchers on rare disease, and developed an online community with over 10,000 rare disease members. Through volunteers, RGI is able to slowly push science and health care forward to meet the needs of patients affected by rare diseases.

The IT Lead will oversee the management and execution of the organization’s IT strategy, ensuring that systems, networks, and technology tools support operational efficiency and the overall mission. The role requires a mix of technical expertise, project management skills, and an understanding of the unique needs of a non‑profit working in the healthcare sector.

• Develop and implement an IT strategy aligned with the organization’s goals, ensuring systems and infrastructure support mission‑critical operations.
• Collaborate with leadership to identify current and future technology needs.
• Manage IT budgets and allocate resources effectively.
• Oversee the organization’s IT infrastructure, including servers, networks, and cloud‑based systems.
• Ensure all systems are maintained, updated, and secure, minimizing downtime.
• Lead the set‑up, configuration, and maintenance of hardware and software tools used by staff.
• Implement security protocols to protect sensitive data, including patient information, donor data, and research findings.
• Ensure compliance with relevant privacy and data protection regulations (e.g., HIPAA, GDPR).
• Conduct regular security audits and provide training to staff on data security best practices.
• Provide day‑to‑day technical support for staff across various departments.
• Troubleshoot and resolve hardware, software, and network issues.
• Train staff on new technologies and software applications, ensuring they are empowered to use technology effectively in their roles.
• Lead IT‑related projects from concept to completion, ensuring that all projects meet deadlines and stay within budget.
• Coordinate with external vendors and service providers for software, hardware, and technology consulting.
• Manage relationships with technology partners to ensure reliable service and negotiate contracts as necessary.
• Stay up‑to‑date with emerging technologies and trends in healthcare, non‑profit management, and IT.
• Propose and implement technological innovations that improve efficiency, streamline operations, and enhance service delivery for patients and families affected by rare diseases.
• Evaluate new software tools, IT systems, and technology solutions that can benefit the organization.

• Bachelor’s degree in Information Technology, Computer Science, or related field (or equivalent work experience).
• 5+ years of experience in IT management, with at least 2 years in a leadership role.
• Proven experience in IT infrastructure management, network administration, and cloud technologies.
• Strong understanding of cybersecurity principles and data privacy regulations (e.g., HIPAA, GDPR).
• Experience with non‑profit organizations or in the healthcare/rare disease sectors is a plus.
• Strong problem‑solving skills and the ability to manage multiple projects simultaneously.
• Excellent communication and interpersonal skills, with the ability to explain technical concepts to non‑technical staff.

Associate

Information Technology

Civic and Social Organizations and Non‑profit Organizations