Director, Community Engagement – RARE-X Research Program

Reports to:
Chief Mission Officer




The Director of Community Engagement role in support of the RARE-X Research Program, is critical to the growth and success of RARE-X and the support of our patient community partners. The right candidate will be a seasoned professional with experience and an understanding of the rare disease patient advocacy ecosystem, the evolving role and needs of patient advocates in research and have the ability to engage deeply and support advocates as it relates to the RARE-X research program. We are looking for a team member who is motivated by the RARE-X mission, and who has the experience and desire to lead Community Engagement efforts and represent the organization within the rare disease ecosystem.

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.


  • Set strategy, goals and metrics for the Community Engagement program and team, in collaboration with Global Genes leadership
  • Work cross-functionally across the organization, including with marketing, data governance and science teams, to achieve the objectives of the RARE-X program and meet the needs of the individuals/advocacy organizations leveraging RARE-X
  • Manage and develop Community Engagement team which includes community engagement and support staff
  • Grow the pipeline of patient communities, and onboard communities supported by RARE-X Research Platform
  • Manage patient community development and support process, including, but not limited to:
    • Identification of new Patient Communities
    • Responding to Inquiries from Patient Communities
    • Conducting Education and Information Sessions for Patient Communities
    • On-boarding of Patient Communities
    • Patient Community Pipeline Management
    • Ongoing Support for Patient Communities
  • Provide regular input to leadership, including insights, feedback from customers and stakeholders, platform needs, etc.
  • Work cross-functionally to develop educational tools and resources for RARE-X patient communities
  • Other Community Engagement activities that may arise from time to time.


The ability to travel on behalf of Global Genes is a must.

  • Represent RARE-X Community Engagement at industry conferences, events and in speaking / presentation opportunities.
  • Represent RARE-X Community Engagement at patient and family conferences, events and in speaking / presentation opportunities.


  • Minimum of a bachelor’s degree
  • Experience in rare disease advocacy, biotechnology, healthcare, or health technology
  • Understanding of translational, pre-clinical and/or clinical research desirable
  • Experience working with patient registries or natural history studies desirable
  • Excellent listening and reflection skills
  • Self-motivated and results-driven personality
  • Exceptional oral and written communication skills
  • Personal qualities of integrity, accountability, credibility, compassion and empathy
  • Passionate commitment to the mission of RARE-X, nonprofit work, and the expanding role of patient advocates in research and drug development

Salary range:  $100,000 to $140,000 (exact salary will be dependent on experience and location)
Comprehensive benefits including health, dental, vision and ancillary insurance offerings, 401(k), paid time off, 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