Director, RARE-X Research Consortia

Reports to:
Chief Executive Officer




As the Director of RARE-X Research Consortia, you will be responsible for structuring and managing multi-stakeholder research consortia focused on specific disease areas. Launched in 2021, the RARE-X research program enables robust data collection, sharing, analysis and federation of natural history data for rare disease. RARE-X is a cross-disorder research program, currently collecting data for over 50 rare diseases, including neurodevelopmental, neurodegenerative, neuromuscular, immunology, renal, and mitochondrial conditions. 

RARE-X is 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 disease consortia including stakeholder management and structuring of consortium program elements and activities
  • Develop and implement multi-year consortium strategy
  • Manage program activities, outcomes and deliverables to ensure they are met in a timely, professional and compliant manner
  • Working with a project manager, manage consortium budget, assets and resources
  • Work cross-functionally with patient engagement, governance, technology and survey methodology teams to align planning and execution efforts for consortia
  • Represent consortia to external stakeholders, effectively communicating challenges, successes, and contextual changes throughout the course of the program
  • Collaborate with business development team to support proposals and agreements for individual programs and consortia
  • Represent RARE-X in meetings, conferences, presentations, and education efforts
  • Develop and present material for publication including data analyses or program summaries
  • Serve as a subject matter expert across the company


  • Advanced degree (PhD or Masters) in Life Sciences or related field
  • 5+ years’ experience directing or coordinating research programs
  • Experience with natural history studies and/or clinical trials including understanding of regulatory and protocol requirements highly desirable
  • Experience working in rare disease research desirable
  • Proven ability to manage complex, multi-stakeholder projects
  • Passion for making an impact with can-do attitude
  • Demonstrated capacity to work collaboratively across multiple disciplines within dynamic team environment
  • Excellent problem solving, project management, communication and presentation skills
  • Personal qualities of integrity, accountability, credibility, creativity and empathy
  • Passionate commitment to the mission of Global Genes and RARE-X – the research program, nonprofit work, and the expanding role of patient advocates in drug development

Salary range:  $120K to $150K (exact salary will be dependent on experience)

Comprehensive benefits including health, dental, vision and ancillary insurance offerings, 401(k), paid time off, cell phone allowance, etc.

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.

Last Revised Date: May 2023