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.

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.

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

Required Qualifications

Education:

Associate Degree In Nursing Or Diploma In Registered Nursing

Certifications/Professional Licenses:

The list below may include all acceptable certifications, professional licenses and issuers. More than one credential, certification or professional license may be required depending on the role.

• Basic Life Support - American Heart Association
• Basic Life Support - American Red Cross
• Registered Nurse - Illinois Department of Financial and Professional Regulation
• Registered Nurse - Missouri Division of Professional Registration

Work Experience:

Clinical Nurse Coordinator (3 Years)

Salary Range

$68,700.00 - $123,600.00 / Annually