RareShare Social Media Community Manager
Rare Genomics Institute
Work remotely with talented peers on a rewarding, non-profit program as part of Rare Genomics Institute’s RareShare team. Engage with RareShare’s online disease-specific communities and social media platforms to facilitate the exchange of information and build interest in rare diseases. Reach out to disease community members and social media followers to promote active participation. Monitor usage and provide updates to RareShare’s social media accounts by posting announcements and news links. Assist in responding to social media inquiries or messages to RareShare’s online support mailbox.
As a RG Social Media Community Manager you will work with the RareShare team and become the chief manager of its social media accounts (Twitter, Facebook and Linkedin) and be a liasson to its disease-focused communities on rareshare.org. You will seek to build rich, meaningful relationships with rare disease audiences and learn about their specific needs. The latter information can help the organization better serve its community members.
- Engage actively with social media sites and disease communities on RareShare’s website.
- Enhance RareShare identity and awareness through social media campaigns and organizational engagement.
- Manage outbound and inbound user communication; address feedback and inquiries and become a trusted companion to the RareShare patient community.
- Develop and execute community strategies.
- Regularly update the external news link list on the RareShare website..
- Develop innovative strategies to drive traffic to RareShare platform.
- Attend weekly evening team teleconference call.
Desired Skills and Experience:
- A degree in business management, biomedical science or a related discipline are preferred.
- Knowledgeable in navigating popular social media sites.
- Excellent organizational skills and ability to manage multiple projects efficiently.
- Excellent oral and written communication skills for effective communication to clients, internal staff and the management team.
- Ability to demonstrate tact, diplomacy and initiative when working with others.
- Passion for learning and serving rare disease communities.
- Able to thrive in a fast-paced, self-starter environment.
- Dependable in serving as a regular spokesperson for the organization over a sustained period of time.
About Rare Genomics Institute
8504 Firestone Blvd., #198, Downey, CA 90241, US
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!