Job Description
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!
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Work remotely with talented peers on a rewarding, nonprofit program as part of Rare Genomics Institute’s RareShare team. Use online generative Artificial Intelligence tools to prepare disease-specific informational summaries for RareShare’s web-based disease communities. Content Developers will work independently to review, assess and edit AI-generated data for scientific accuracy and readability by a non-expert audience. On occasion, there will be opportunities to help produce RareShare podcasts and newsletters. Learn about the science behind the diagnosis and treatment of rare diseases and help disseminate this information to those who need it.
As a RG Volunteer, you will be a part of the organization’s scientific educational efforts that works with the patients, families, the scientific community, care providers and disease-specific organizations to provide current, accurate information that can be shared online.
Position Responsibilities - The Medical/Science Content Developer works with members of the RareShare team to prepare and review rare disease informational content for the website and other venues.
- Attend bi-weekly conference call meetings and work with the team to plan and execute specific activities.
- Potentially enlist and manage other volunteers such as student interns who can assist in the team’s work.
- Support the overall efforts of the Rare Genomics Institute and its RareShare team.
Desired Skills And Experience - Bachelor’s or higher degree in life sciences or biomedical field.
- Ability to interpret, critically assess and validate the accuracy of complex rare disease scientific and medical information.
- Strong writing, editing, reviewing and verbal communication skills.
- Proficient computer skills in the utilization of generative AI tools and writing software.
- Reliable 5-10 hour commitment each week.
- Ability to work both collaboratively and independently to achieve stated goals.
Job Tags
Remote work,