Work remotely with talented peers on a rewarding, nonprofit program as part of the Rare Genomics Institute RareShare team. Build and enhance features of the RareShare.org website, an online forum for patients, family members, doctors, researchers and scientist interested in communicating about rare diseases.
As a RG Volunteer, you will be a part of the organization’s efforts to connect and educate our rare disease communities. You will help continually update and design improvements for the RareShare web-page user experience.
Design and implement new features and enhanced user interface of RareShare web application.
Assist in updating RareShare content as needed.
Troubleshoot user help requests as needed.
Support the RareShare team in accessing user and web application data.
Attend weekly team conference call meetings and actively work with team members.
Desired Skills and Experience:
5-10 hour commitment each week is required for this position. This opportunity is flexible enough to work around the schedule of a full-time job.
Working knowledge of Git, Amazon Web Service (AWS) is a plus.
Strong communication and problem solving skills.
Creative thinker with excellent attention to detail.
Nice to haves:
Experience with Serverless architecture, AWS Amplify, Lambda, DynamoDB, and Elastic Search .
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.