Manager/Senior Manager, Communications Research Programs

Reports to:
Senior Director, Marketing & Communications




The Communications Manager, Research Programs will support the Community Engagement and Researcher engagement efforts for the RARE-X Research Program, as well as other key research readiness initiatives. This role is critical to the growth and success of RARE-X and the support of our patient community partners and stakeholders.

The right candidate will be a well rounded communications professional with experience in patient advocacy, biopharma and/or healthcare. Life sciences or research experience is highly desired. This team member will implement communications programs to engage deeply and support advocates as it relates to the RARE-X research program.

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.


In collaboration with the broader Global Genes Marketing & Communications Team, this position will be focused on the RARE-X Research program. In addition to developing communications to demonstrate the value of RARE-X and its principles, two key outputs for this role are building the RARE-X communities through recruitment and engagement, and developing researcher engagement. Specific areas of focus include but are include but are not
limited to:

Content Strategy & Communications:

  • Development of positioning and value proposition of RARE-X Research Program Development and execution of new communications, educational content and resources to be used across all platforms (blog, video, social, email, website, events, etc.).
  • Conceptualize and execute email marketing and newsletter communications, and automated flows to generate awareness, interest, recruitment, and ongoing engagement to the RARE-X Data Collection Program/Research-related programs
  • Conceptualize and execute email marketing and newsletter communications, and automated flows to generate awareness, interest, recruitment, and ongoing engagement to the RARE-X Data Collection Program/Research-related programs
  • Social Media support: contribute to strategy, development, and execution of initiatives across Facebook, Instagram, Twitter, LinkedIn, YouTube and possibly others In collaboration with Science and Research team, create a publication strategy for RARE-X
  • Development of key communications documents and materials: presentations, pitch materials, letters to stakeholders, press releases, etc.
  • Work with the marketing team and internal and external subject matter experts to develop engaging website content
  • Brainstorm and implement new and creative growth and engagement strategies through digital marketing, in-person experiences, science & research, etc
  • Ensure that the brand message is consistent
  • Responsible for successful delivery of assigned projects

Other Responsibilities:

  • Support Community Engagement Team initiatives; including patient and patient advocacy group (PAG) training, and direct patient/user outreach
  • Translate clearly defined project needs into deliverables, milestones, and timelines by establishing project plans
  • Assist in the execution of events on behalf of Global Genes & RARE-X
  • Participate in regular team meetings, strategic planning and other discussions as required
  • Work with program managers and marketing team to develop marketing campaigns, content, strategies to support other Global Genes research initiatives
  • Develop partnerships with like minded organizations to benefit overall community, contribute to community engagement marketing-driven initiatives like Rare Disease Day
  • Additional tasks may be added at the discretion of Global Genes & RARE-X
  • Future travel could include minimum travel for key external meetings and conferences, and/or internal planning meetings, team building activities, etc.


  • Bachelor’s degree, preferably in marketing, communications or relevant subject area
  • Minimum of three years’ experience in marketing and communications
  • Experience within rare disease advocacy, biotechnology, healthcare, pharmaceutical or health technology organizations required
  • A demonstrated ability to take complex scientific information and data and communicate it effectively to non-scientific/non-medical audiences
  • Experience working with patient registries or natural history studies desirable
  • Experience with human subjects research highly 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.
  • Works well with a team and on individual projects
  • Passionate commitment to the mission of Global Genes, nonprofit work, and the expanding role of patient advocates in research and drug development

Salary range: $75,000 to $90,000 – The title/level of this role and the salary will be determined based on the experience of the selected candidate.

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.

Last Revised Date: November 2023