-
21 people are interested
RG Patient Research Services (RGPRS) Liaison
ORGANIZATION: Rare Genomics Institute
Please visit the new page to apply.
-
21 people are interested
RG Patient Research Services (RGPRS) is an initiative of Rare Genomics Institute (RG) that aims to advance research beyond genome sequencing for some of the most challenging rare diseases. Our research model involves in-depth genetic analysis informed by comprehensive and well-defined medical phenotypes for each patient is carried out by our in-house team of PhD-trained volunteer analysts. These analyses along with an extensive compilation of the literature relating to symptoms, genes of interest, treatments, or similar cases as well as opportunities to join relevant clinical trials and connect with external experts, are assimilated into scientific reports including recommended next steps. These reports are returned to the patients and published on our online forum for further research and collaboration. The liaison position will assist families with navigating the process to apply to the RGPRS program, coordinate the information necessary for acceptance, and providing reporting data to the PAT team. Helping rare disease families is an extremely rewarding experience. However, the ability to promptly carry out responsibilities of the job is essential.
Responsibilities:
- Receive data from RG families or laboratories and ensure proper sequencing data and files are uploaded onto PKB for RGPRS team
- Create a case for participation in RGPRS, manage case by ensuring proper RGPRS follow up and relaying updates to RG families
- Present your updates on our weekly PAT and RGPRS calls
Qualifications:
- Bachelor’s Degree
- 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
May 3, 2019
SKILLS
- Database Administration
- Administrative Support
GOOD FOR
N/A
REQUIREMENTS
- Few hours per week