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 PAT 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.
- 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
- 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
- Database Administration
- Administrative Support
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