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Project Manager - RareShare

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Rare Genomics Institute

  • 9 people are interested

Work remotely with talented peers on a rewarding, nonprofit program as part of Rare Genomics Institute’s RareShare team. Lead, track and coordinate activities pertaining to the management and promotion of the website. Facilitate the production and dissemination of rare disease-specific informational content such as podcasts, newsletters and disease summaries to RareShare community members. Oversee the development of new features for the website and support organizational outreach efforts to build collaborative opportunities.

As a RG Volunteer, you will be a part of the organization’s vision to serve those coping with rare diseases. RareShare’s online communities are a social network where those with an interest in specific rare disorders can exchange information with each other. The RareShare team provides not only the framework for doing this, but actively researches and produces disease-specific content of interest to its communities.


  • Manage a diverse team of scientists, web developers, electronic media and community engagement specialists, and business development organizers to achieve organizational goals.
  • Track and report on RareShare team activities to the Rare Genomics project management team.
  • Summarize and report on Rare Genomics activities and directives to the RareShare team.
  • Attend weekly conference call team meetings for Rare Genomics and RareShare held on Monday and Tuesday evenings, respectively.
  • Create detailed project plans and ensure their timely completion.
  • Promote the organization’s visibility and growth by exploring new opportunities.

Desired Skills and Experience:

  • A degree in marketing, biomedical science or a related discipline are preferred.
  • Strong knowledge of Project Management processes and tools.
  • Excellent organizational skills and ability to manage multiple projects efficiently.
  • Excellent oral and written communication skills for effective interactions with internal staff, the management team and clients.
  • Ability to demonstrate tact, diplomacy and initiative when working with others.
  • Demonstrated leadership skills in being a dependable presence at team meetings and inspiring others to be creative and productive.
  • Passion for learning and serving rare disease communities.
  • Able to thrive in a fast-paced, self-starter environment.

8 More opportunities with Rare Genomics Institute

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About Rare Genomics Institute


8504 Firestone Blvd., #198, Downey, CA 90241, US

Mission Statement

At RG, we are more than just an organization. We are a community dedicated to helping rare disease patients find hope for a cure. We work alongside patients and their families, providing them with the necessary tools, knowledge, and connections so that they can better understand the cause of their disease. We believe that every patient deserves more out of life.


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!

Health & Medicine


We'll work with your schedule.


This is a Virtual Opportunity with no fixed address.


  • Program Management




  • 5-10 house per week

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