-
13 people are interested
PAT Advocacy Liaison
ORGANIZATION: Rare Genomics Institute
Please visit the new page to apply.
-
13 people are interested
The Advocacy Liaison works as part of the Patient Advocacy Team (PAT) in Rare Genomics Institute (RG). Under the supervision of the VP of Patient Advocacy, the role will focus on identifying, developing, executing and tracking key advocacy efforts to benefit the rare disease patients served by RG. Alongside the Patient Advocate Associates (PAA’s), the Advocacy Liaison will guide RG patients through the advocacy programs. These families have been through so much already, and now you have the ability to directly help families and their children. While helping these rare disease families through RG is an extremely rewarding experience, the ability to promptly carry out responsibilities of the job is essential to ensure proper healthcare delivery. The work is completely virtual (via email), so you can easily adjust your work to your schedule. Expect at least about 5 hours a week.
Responsibilities:
- Market research and development
- Phone calls with potential RG advocacy collaborators
- Development of program protocols, materials and metrics tracking
- Cross-team collaboration to ensure promotion of advocacy efforts
- Patient navigation through RG advocacy programs. BCC the PAT team on all of your email correspondence with RG families and colleagues
- Be prompt with responses to patients and RG colleagues, at least within 3 days
- Bachelor’s Degree or expected Graduation date for a Bachelor’s degree in a science or health related field
- Well-organized and detail oriented; willing to take on additional responsibilities and challenges.
- Exceptional communication skills
- Experience or interest in the medical, research and non-profit field
1 More opportunity with Rare Genomics Institute
6 ReviewsOpportunities
About Rare Genomics Institute
Location:
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.
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!
CAUSE AREAS
WHEN
WHERE
This is a Virtual Opportunity with no fixed address.
DATE POSTED
January 9, 2019
SKILLS
- Research
- Cross-cultural Communication
- Verbal / Written Communication
GOOD FOR
N/A
REQUIREMENTS
- Few hours per week