Patient Advocate Team Liaison - RGPRS

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Work remotely with talented peers on a rewarding, nonprofit program. Contribute to your community while using your professional expertise, and work with talented peers in a rewarding, non-profit environment! The Rare Genomics Institute (RG) is making a difference in the rare disease community. Rare Genomics is a nonprofit organization that helps families in need of special medical testing and manage their genome sequencing process. 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. We recognize that in the majority of cases sequencing data alone will not be actionable for patients. Therefore we are leveraging our broad network of expert biomedical researchers to crowd-source scientific ideas, experiments, and analyses that may lead to a better understanding of rare diseases.

Objective:

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.

Responsibilities:

• Guide RG families through the process of obtaining clinical sequencing, analysis, results and further research through the RGPRS initiative
• Receive data from RG families and create a case for participation in RGPRS
• Manage the process for any applications that are received
• Explain the RG process and answer any questions families may have and work to get them connected to a site
• Once connected, coordinate tasks needed for sequencing such as method of payment, shipment of samples, completion of required forms from RG sites, etc.
• Record updates for families on a Google doc and 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 fields