Job Description
Rare Genomics Institute (RGI) is a nonprofit organization dedicated to helping rare disease
patients find a diagnosis, treatment, and 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 8
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. To learn more about RGI check out our website, like us on
Facebook, and follow us on Twitter!
,
Information Technology(IT) Team Lead
Do good for your community while using your professional expertise. Work with talented peers on a rewarding non-profit cause related program. Rare Genomics Institute is making a difference. Rare Genomics Institute is a non-profit organization that helps families in need of genome research.
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. You will work closely with cross-functional teams to identify technological needs, ensure data security, and optimize our IT infrastructure. This 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.
Qualification
- 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.
Responsibilities IT Strategy & Planning
- 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.
Infrastructure Management
- 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 setup, configuration, and maintenance of hardware and software tools used by staff.
Cybersecurity & Data Protection
- 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.
Technology Support & Training
- 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.
Project Management & Vendor Relations
- 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.
Innovation & Continuous Improvement
This is a volunteer opportunity provided by VolunteerMatch, in partnership with LinkedIn for Good.
Job Tags
Work experience placement,