Project Manager – RARE-X Research

Reports to:
Director, Program Operations



Global Genes is looking for a Project Manager to join the team to manage a diverse spectrum of RARE-X research initiatives.

About RARE-X and Global Genes:
Launched in 2021, the RARE-X research program enables robust data collection, sharing, analysis and federation of natural history data for rare disease, with the goal of partnering with patient advocates to accelerate rare disease research. RARE-X is a cross-disorder research program, currently collecting data from 100+ rare disease communities, including neurodevelopmental, neurodegenerative, neuromuscular, immunology, renal, and mitochondrial conditions.

RARE-X is a research program of Global Genes, a non-profit 501c3 organization, whose mission is to support next generation advocacy by providing patient advocates with a continuum of services to accelerate their path from early support and awareness to research readiness, using a collaborative approach that involves biopharma, researchers and funders, with data as a central core.


  • Manage the planning, initiation, and execution of multifaceted strategic and research-related projects. Serve as project point-of-contact and liaise between sponsoring organizations and other collaborating organizations.
  • Define project scope, goals, deliverables, and resource needs in collaboration with key stakeholders and project team members. Develop appropriate project metrics and ensure their alignment with organization and team performance metrics.
  • Develop and maintain detailed project plans, schedules, and budgets. Track progress against milestones via project management software tools.
  • Facilitate effective cross-functional communication and collaboration among project team members, ensuring alignment on organization-wide program objectives and priorities
  • Provide timely support to resolve roadblocks for team members to achieve project and program goals.
  • Monitor project progress and performance. Provide regular status updates to internal and external stakeholders via formal and informal presentations on topics such as project status reports, risk assessments, and resource utilization reports.
  • Identify and manage project risks, issues, and dependencies. Propose and implement mitigation strategies as needed.
  • Ensure project documentation (contracts, agendas, minutes, project plans, presentations, etc.) is organized, complete, timely, accurate, and in accordance with standards and policies.
  • Manage communication and collaboration with internal and external project partners, including sponsoring agencies, patient group leaders, researchers, vendors, etc. Lead regular project meetings with partners. Conduct large committee meetings when needed.
  • When needed, manage conflicts on projects and project teams. Proactively escalate issues to senior management and propose solutions.
  • Support the analysis, evaluation, and interpretation of project data to be used in grant proposals, publications, PR, and program reviews.
  • Ensure compliance with regulatory requirements and industry best practices in health data collection.


  • Bachelor’s or higher degree in a major such as social or health science or related; OR appropriate combination of education and experience and 5 years’ research study or other relevant experience required.
  • 3+ years in project management, preferably in healthcare, public health, or health tech fields. CAPM or PMP certification is a plus.
  • Strong familiarity with project management software tools, methodologies, and best practices
  • Demonstrated ability to lead without formal authority and past experience leading project delivery through cross-functional collaboration.
  • Past experience interacting with patients and their caregivers is strongly preferred.
  • Good communication skills; demonstrated effective spoken and written communication, including willingness to ask questions when clarification or amplification is required.
  • Ability to work in a remote team environment. Ability to work without close supervision.
  • Attention to detail and ability to adhere to instructions/procedures. Flexibility in adapting to new procedures and contributing to building new procedures when needed.
  • Comfortable in a start-up environment.
  • Good time management skills; efficient and resourceful in problem-solving.
  • Ability to receive and benefit from constructive feedback; willingness to expand skill set and improve.
  • Knowledge of basic computer skills, familiarity with Windows environment.
  • Must complete CITI training before interacting with any participants & must recertify every 3 years.

Salary range:
$90,000 to $110,000 depending on relevant experience plus comprehensive benefits. Comprehensive benefits including health, dental, vision and ancillary insurance offerings, 401(k), paid time off, cell phone allowance, etc.

Please submit resumes and cover letters to [email protected]. We appreciate all interest however, we will only respond to those individuals with whom we have a further interest.

Global Genes is an Equal Opportunity Employer committed to diversity in the workplace.

The statements herein are intended to describe the general nature and level of work being performed by employees and are not to be construed as an exhaustive list of responsibilities, duties, and skills required of personnel so classified. Furthermore, they do not establish a contract for employment and are subject to change at the discretion of the employer.