Description

Position Summary

Posting Note: The Nurse Program Coordinator will support the Genetics team by coordinating care for pediatric patients diagnosed with Lysosomal Storage Disorders (LSDs). These rare genetic conditions require lifelong enzyme replacement therapy and highly coordinated care between the clinic, infusion center, specialty pharmacies, home health agencies, patients, and families. Phoenix Children's is one of the few hospitals providing this specialized care, making this a unique opportunity to positively impact the lives of children with rare diseases.

Minimum Qualifications:

RN with 2-3 years of recent clinical nursing experience
Inpatient and/or outpatient nursing experience preferred
Strong organizational, multitasking, and care coordination skills

Primary Responsibilities:

Coordinate care for approximately 100 active patients receiving enzyme replacement therapy for Lysosomal Storage Disorders.
Collaborate with the Infusion Center to schedule monthly enzyme replacement infusions.
Coordinate with specialty pharmacies to ensure medications are obtained and delivered prior to scheduled infusion appointments.
Arrange home infusion services for patients receiving treatment outside the hospital by partnering with home health agencies and specialty pharmacies to ensure medications are delivered and administered on time.
Coordinate clinic visits, including chart preparation, obtaining outside laboratory results, and arranging laboratory testing following appointments.
Serve as a liaison between providers, families, infusion services, specialty pharmacies, home health agencies, and other multidisciplinary team members.
Assist with ongoing management of patients from newborn diagnosis through adulthood as advances in treatment continue to improve life expectancy.
Ensure timely coordination of therapy, as missed enzyme replacement treatments can lead to developmental delays and disease progression.

Ideal Candidate:

Highly organized with exceptional attention to detail.
Able to manage multiple priorities and coordinate care across several departments and external partners.
Comfortable delegating tasks and collaborating with multidisciplinary teams.
Passionate about learning and caring for patients with rare genetic disorders.
Interested in emerging therapies and advancements in genetic medicine.
Enjoys building long-term relationships with patients and families while serving as a key resource throughout their treatment journey.

This position coordinates the patient care services, workflow, and activities provided by nursing and support staff of assigned program. This position provides guidance, support, and direction to staff to ensure consistent provision of developmentally appropriate quality patient care in accordance with all applicable federal, regulatory, and professional standards and requirements.

Position Duties

• Acts as a communication liaison between patient, family, and interdisciplinary team by providing teaching and support to recognize limitations and strengths within the patient/family system.
• Assists with identification of staff and community learning needs from a group and individual perspective. Provides staff and community education on new skills, equipment, policies, protocols, and/or guidelines.
• Identifies and acts upon potential risks, investigates and documents follow-up on significant incidents, and involves appropriate resource(s) to ensure timely resolution and implementation of corrective measures in accordance with professional, regulatory, and governmental agencies and standards.
• Maintains appropriate records to facilitate accurate data collection and prepares required grant reports.
• Manages the daily operations of a program. Ensures clinic and program effectiveness. Develops, implements, and monitors plans for ensuring the highest quality of care.
• Provides developmentally appropriate clinical care within professional domain to ensure delivery of quality and developmentally appropriate patient care.
• Regularly reviews research-based literature to improve clinical care for specific clinical populations as well as compliance with regulatory bodies.
• Serves as a clinical role model, patient advocate, and resource to staff, patients, and families. Shares knowledge and skills of specialty area to assist problem solve collaboratively. Maintains skill and knowledge proficiency and competency within specialty area.
• Works collaboratively with unit leadership to provide guidance and direction to staff by taking an active role in planning, decision-making, and communication to healthcare team of issues affecting the interdisciplinary team and integration of patient care activities.
• Performs miscellaneous job related duties as requested.

Phoenix Children's Mission, Vision, & Values

Mission
To advance hope, healing and the best healthcare for children and their families
Vision
Phoenix Children's will be the leading pediatric health system in the Southwest, nationally recognized for exceptional care, innovative research and advanced medical education.

We realize this vision by:

• Offering the most comprehensive care across ages, communities and specialties
• Investing in innovative research, including emerging treatments, tools and technologies
• Advancing education and training to shape the next generation of clinical leaders
• Advocating for the health and well-being of children and families

Values

• We place children and families at the center of all we do
• We deliver exceptional care, every day and in every way
• We collaborate with colleagues, partners and communities to amplify our impact
• We set the standards of pediatric healthcare today, and innovate for the future
• We are accountable for making the highest quality care accessible and affordable