RARE Concierge Navigator

Reports to:
Director of Patient Services & Education


Remote/virtual (with option to use offices in Aliso Viejo CA, and Washington DC, as desired)


The RARE Concierge Navigator is a role in Global Genes that speaks to the heart of what we do, providing service and support directly to patients, caregivers, and other members of the rare disease community.

The candidate will respond to inquiries received by RARE Concierge in a timely manner and with information and resources that address the individual’s specific need(s). We are seeking a confident, poised candidate who is compassionate, empathic, and a great listener. An ideal candidate will have an understanding of the challenges that patients and their caregivers face during the rare disease journey. The candidate should be able to build rapport and instill trust. Additionally, the candidate should feel comfortable communicating via different channels (e.g., email, phone).

Some of the RARE Concierge Navigator duties include:
● Triage inquiries received by RARE Concierge.
● Respond to phone and written inquiries received by patients living with an undiagnosed or diagnosed rare diseases and/or their caregivers.
● Provide specialized support tailored to meet the specific need(s) of the inquirer.
● Establish and maintain lasting relationships with patients, caregivers, and the rare disease community in general.
● Understand the challenges experienced by those navigating through the rare disease journey.
● Actively build partnerships within the rare disease community.
● Work closely with the Director of Patient Services & Education and other Global Genes staff to strategize, create, and execute project plans.
● Assist in defining processes for RARE Concierge.
● Assist in creating and maintaining SOPs, documentation, and training materials for RARE Concierge.
● Assist in training additional team members and new hires in RARE Concierge workflows.
● Support the maintenance and resource development within helpdesk software.
● Work collaboratively with the Data Insights team to monitor key metrics and inquiry trends with the goal of identifying and supporting changing patient needs.
● Comfortable in presenting RARE Concierge information to external stakeholders with the aim of building collaborative relationships.

● Bachelor’s degree, and/or equivalent experience in a healthcare-related field such as social work, public health, counseling, health education, nursing or related areas.
● Experience in individual or family healthcare case management and/or working in a call/contact center.
● Strong passion for the rare disease community required.
● Experience in program or project coordination, managing multiple priorities and working within set deadlines.
● Experience in handling confidential patient health information preferred.
● Positive attitude, ability to work collaboratively on a cross-functional team and also to work autonomously where appropriate.
● Excellent written and verbal communication skills, strong time management and results-orientation
● Comfortable working in a fast-paced and dispersed staff environment and with a flexible work schedule as may occasionally be required (e.g., across global/US time zones, etc.).
● Demonstrated adaptability in learning new technologies.
● Bilingual (English & Spanish) or proficiency in multiple languages is a plus.
● Expertise in Microsoft office, Google Workspace, Slack and Zoom required.
● Ability to travel as needed for attendance at meetings and conferences.

● Core Values: Integrity, Authenticity, Respect, Creativity, Collaboration and Fun
● Competencies: Personal, People, Strategic and Position
● OKRs: Objectives and Key Results

Salary range: $50,000 to $61,000 plus comprehensive benefits.

Please submit resumes and cover letters to [email protected]. We appreciate all interest however, we will only respond to those individuals with whom we have a further interest.

Global Genes is an Equal Opportunity Employer committed to diversity in the workplace.

The statements herein are intended to describe the general nature and level of work being performed by employees and are not to be construed as an exhaustive list of responsibilities, duties, and skills required of personnel so classified. Furthermore, they do not establish a contract for employment and are subject to change at the discretion of the employer.

Last Revised Date: December 2023