Location
SAINT LOUIS, MO 63110
Scheduled Hours
40
Position Summary
This nurse coordinator's role will be to coordinate care for patients with rare neurologic, genetic, and neurodevelopmental disorders, including, but not limited to, Angelman Syndrome, Tuberous Sclerosis Complex (TSC), Leukodystrophies, and related conditions. The nurse coordinator serves as the primary family contact, participates in multidisciplinary clinics, and coordinates care across specialties.
Job Description
Primary Duties & Responsibilities:
Care Coordination and Patient Navigation Serves as the primary point of contact for patients and families with rare neurologic, genetic, and neurodevelopmental disorders, fostering continuity of care and long-term relationships.
Coordinates multidisciplinary care plans, specialty referrals, diagnostic testing, and follow-up across internal and external providers.
Participates in multidisciplinary care conferences, communicates diagnostic results and treatment recommendations, and assists families in navigating healthcare, educational, and community resources.
Supports care transitions across inpatient, outpatient, and adult care settings and facilitates access to disease-specific programs, registries, and support services.
Multidisciplinary Clinic Coordination and Program Support Participates in rare disease specialty clinics and multidisciplinary visits, coordinating pre-visit planning, clinic flow, and follow-up activities.
Provides patient and family education regarding diagnoses, treatment plans, surveillance recommendations, and available resources.
Completes after-visit summaries and ensures timely implementation of care plan recommendations.
Supports development and optimization of rare disease clinic operations and program growth initiatives.
Clinical Support, Triage, and Family Education Triages patient calls, electronic messages, and clinical concerns, collaborating with providers to determine appropriate interventions and follow-up.
Provides education regarding medications, treatments, procedures, genetic testing results, symptom management, and disease-specific care recommendations.
Coordinates specialty medications, prior authorizations, and ongoing treatment monitoring.
Serves as a clinical resource for patients, families, schools, home health agencies, and community providers.
Quality improvement and Program Development Participates in quality improvement initiatives, patient registries, and outcome-tracking activities to enhance care delivery and patient experience.
Maintains compliance with institutional policies, regulatory requirements, environmental safety standards, and infection prevention practices.
Assists with development of patient education materials, care coordination resources, and program workflows.
Maintains current knowledge of rare disease treatments, clinical guidelines, and best practices.
Reviews EPIC treatment plans for new order sets and clinical trials.
Serves as Epic Trainer.
Performs other duties as assigned.
Working Conditions:
Job Location/Working Conditions
Normal office environment
Requires extensive safety training
Exposure to blood-borne pathogens
Alternative work schedules
Exposure to chemicals
Requires protective devices
Patient care setting
Direct patient care setting
Satellite locations
Ability to travel to various on- and off-campus locations
Physical Effort
Typically sitting at desk or table
Typically standing or walking
Typically bending, crouching, stooping
Occasional lifting (25 lbs or less)
Equipment
Office equipment
Clinical/diagnostic equipment
The above statements are intended to describe the general nature and level of work performed by people assigned to this classification. They are not intended to be construed as an exhaustive list of all job duties performed by the personnel so classified. Management reserves the right to revise or amend duties at any time.
Required Qualifications
Education:
Associate Degree In Nursing Or Diploma In Registered…