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 ...
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 ...
RN (Registered Nurse)
Wickenburg, AZ · On-site
Rare. Could float to help in the Surgery Clinic area. - Scrub Color/Dress Code: Scrubs provided. - Unit/Department specific orientation: 1 week.
RN (Registered Nurse)
Wickenburg, AZ · On-site
Rare. Could float to help in the Surgery Clinic area. - Scrub Color/Dress Code: Scrubs provided. - Unit/Department specific orientation: 1 week.
Arizona - Dermatologist Needed to Lead the Next Chapter of a Successful Private Dermatology Pract...
$400K - $600K/yr
Step into a rare opportunity to take the reins of a respected, physician-owned practice with deep roots in the community. Built-in Mentorship: Work alongside the current owner for hands-on guidance ...
Arizona - Dermatologist Needed to Lead the Next Chapter of a Successful Private Dermatology Pract...
$400K - $600K/yr
Step into a rare opportunity to take the reins of a respected, physician-owned practice with deep roots in the community. Built-in Mentorship: Work alongside the current owner for hands-on guidance ...
Courtroom Clerk Technician
Globe, AZ · On-site
$50K - $63K/yr
SAFETY RISK EXPOSURE Incumbents in this position are exposed to safety risk; may become exposed to rare physical danger, rare chemical hazards, rare bloodborne pathogens. PROTECTIVE GEAR & SAFETY ...
Courtroom Clerk Technician
Globe, AZ · On-site
$50K - $63K/yr
SAFETY RISK EXPOSURE Incumbents in this position are exposed to safety risk; may become exposed to rare physical danger, rare chemical hazards, rare bloodborne pathogens. PROTECTIVE GEAR & SAFETY ...
Neurology Account Specialist - Phoenix, AZ
$160K - $185K/yr
The company's growing rare disease team is helping shape the future of RADICAVA (edaravone) for the amyotrophic lateral sclerosis (ALS) community. In the United States, RADICAVA has an established ...
Neurology Account Specialist - Phoenix, AZ
$160K - $185K/yr
The company's growing rare disease team is helping shape the future of RADICAVA (edaravone) for the amyotrophic lateral sclerosis (ALS) community. In the United States, RADICAVA has an established ...
Hybrid Virtual Sales Representative
Phoenix, AZ · On-site +1
Medical
Dental
Vision
Life
Retirement
PTO
Inizio Engage has a partnership with Zevra, supporting a rare disease product, through our expertise across Commercial, Patient Solutions, and Medical Affairs businesses. We are looking for ...
Hybrid Virtual Sales Representative
Phoenix, AZ · On-site +1
Medical
Dental
Vision
Life
Retirement
PTO
Inizio Engage has a partnership with Zevra, supporting a rare disease product, through our expertise across Commercial, Patient Solutions, and Medical Affairs businesses. We are looking for ...
Regional Sales Manager
Phoenix, AZ · On-site
Medical
Dental
Vision
Retirement
PTO
This role will lead and develop the most respected, high performing and patient driven Rare Disease Sales Team in the industry. He/ she will be responsible for creating and maintaining a patient ...
Regional Sales Manager
Phoenix, AZ · On-site
Medical
Dental
Vision
Retirement
PTO
This role will lead and develop the most respected, high performing and patient driven Rare Disease Sales Team in the industry. He/ she will be responsible for creating and maintaining a patient ...
Regional Sales Manager
Phoenix, AZ · On-site
Medical
Dental
Vision
Retirement
PTO
This role will lead and develop the most respected, high performing and patient driven Rare Disease Sales Team in the industry. He/ she will be responsible for creating and maintaining a patient ...
Regional Sales Manager
Phoenix, AZ · On-site
Medical
Dental
Vision
Retirement
PTO
This role will lead and develop the most respected, high performing and patient driven Rare Disease Sales Team in the industry. He/ she will be responsible for creating and maintaining a patient ...
Courtroom Clerk Technician
Globe, AZ · On-site
$50K - $63K/yr
SAFETY RISK EXPOSURE Incumbents in this position are exposed to safety risk; may become exposed to rare physical danger, rare chemical hazards, rare bloodborne pathogens. PROTECTIVE GEAR & SAFETY ...
Courtroom Clerk Technician
Globe, AZ · On-site
$50K - $63K/yr
SAFETY RISK EXPOSURE Incumbents in this position are exposed to safety risk; may become exposed to rare physical danger, rare chemical hazards, rare bloodborne pathogens. PROTECTIVE GEAR & SAFETY ...
Courtroom Clerk Technician
Globe, AZ · On-site
$34K - $47K/yr
Safety Risk Exposure Incumbents in this position are exposed to safety risk; may become exposed to rare physical danger, rare chemical hazards, rare bloodborne pathogens. Protective Gear & Safety ...
Courtroom Clerk Technician
Globe, AZ · On-site
$34K - $47K/yr
Safety Risk Exposure Incumbents in this position are exposed to safety risk; may become exposed to rare physical danger, rare chemical hazards, rare bloodborne pathogens. Protective Gear & Safety ...
Regional Sales Manager
Phoenix, AZ · On-site +1
Medical
Dental
Vision
Retirement
PTO
This role will lead and develop the most respected, high performing and patient driven Rare Disease Sales Team in the industry. He/ she will be responsible for creating and maintaining a patient ...
Regional Sales Manager
Phoenix, AZ · On-site +1
Medical
Dental
Vision
Retirement
PTO
This role will lead and develop the most respected, high performing and patient driven Rare Disease Sales Team in the industry. He/ she will be responsible for creating and maintaining a patient ...
Courtroom Clerk Technician
Globe, AZ · On-site
$50K - $63K/yr
SAFETY RISK EXPOSURE Incumbents in this position are exposed to safety risk; may become exposed to rare physical danger, rare chemical hazards, rare bloodborne pathogens. PROTECTIVE GEAR & SAFETY ...
Courtroom Clerk Technician
Globe, AZ · On-site
$50K - $63K/yr
SAFETY RISK EXPOSURE Incumbents in this position are exposed to safety risk; may become exposed to rare physical danger, rare chemical hazards, rare bloodborne pathogens. PROTECTIVE GEAR & SAFETY ...
Neurology Account Specialist - Phoenix, AZ
$160K - $185K/yr
The company's growing rare disease team is helping shape the future of RADICAVA ® (edaravone) for the amyotrophic lateral sclerosis (ALS) community. In the United States, RADICAVA ® has an ...
Neurology Account Specialist - Phoenix, AZ
$160K - $185K/yr
The company's growing rare disease team is helping shape the future of RADICAVA ® (edaravone) for the amyotrophic lateral sclerosis (ALS) community. In the United States, RADICAVA ® has an ...
Neurology Account Specialist - Phoenix, AZ
Phoenix, AZ · On-site +1
$160K - $185K/yr
The company's growing rare disease team is helping shape the future of RADICAVA ® (edaravone) for the amyotrophic lateral sclerosis (ALS) community. In the United States, RADICAVA ® has an ...
Neurology Account Specialist - Phoenix, AZ
Phoenix, AZ · On-site +1
$160K - $185K/yr
The company's growing rare disease team is helping shape the future of RADICAVA ® (edaravone) for the amyotrophic lateral sclerosis (ALS) community. In the United States, RADICAVA ® has an ...
Class A CDL Owner Operators - Enclosed Auto Transport
Wickenburg, AZ · On-site
$400K/yr
We are seeking experienced Class A owner operators to join our top-notch team, delivering rare vehicles across the nation in our state-of-the-art enclosed car carriers. As an Intercity Lines owner ...
Class A CDL Owner Operators - Enclosed Auto Transport
Wickenburg, AZ · On-site
$400K/yr
We are seeking experienced Class A owner operators to join our top-notch team, delivering rare vehicles across the nation in our state-of-the-art enclosed car carriers. As an Intercity Lines owner ...
HVAC Service Technician -- Full-Time -- Arizona Residents Only
Gilbert, AZ · On-site
$91K - $250K/mo
Medical
Retirement
PTO
Here's the same with all special characters removed -- no emojis, no bullet points, no symbols: HVAC TECH WANTED - Rare Opening at Valleywide Cooling | Steady Work No Games This isn't your average ...
Quick apply
HVAC Service Technician -- Full-Time -- Arizona Residents Only
Gilbert, AZ · On-site
$91K - $250K/mo
Medical
Retirement
PTO
Here's the same with all special characters removed -- no emojis, no bullet points, no symbols: HVAC TECH WANTED - Rare Opening at Valleywide Cooling | Steady Work No Games This isn't your average ...
HVAC Service Technician -- Full-Time -- Arizona Residents Only
$91K - $250K/mo
Medical
Retirement
PTO
Here's the same with all special characters removed -- no emojis, no bullet points, no symbols: HVAC TECH WANTED - Rare Opening at Valleywide Cooling | Steady Work No Games This isn't your average ...
Quick apply
HVAC Service Technician -- Full-Time -- Arizona Residents Only
$91K - $250K/mo
Medical
Retirement
PTO
Here's the same with all special characters removed -- no emojis, no bullet points, no symbols: HVAC TECH WANTED - Rare Opening at Valleywide Cooling | Steady Work No Games This isn't your average ...
Senior Tax Associates to Senior Tax Manager
Scottsdale, AZ · Hybrid
$80K - $180K/yr
Medical
Dental
Vision
Retirement
PTO
This is a rare public accounting opportunity offering true 40-hour workweeks year-round , strong mentorship, and significant bonuses tied to performance. The firm supports steady, long-term career ...
Quick apply
Senior Tax Associates to Senior Tax Manager
Scottsdale, AZ · Hybrid
$80K - $180K/yr
Medical
Dental
Vision
Retirement
PTO
This is a rare public accounting opportunity offering true 40-hour workweeks year-round , strong mentorship, and significant bonuses tied to performance. The firm supports steady, long-term career ...
Entry Level Bookkeeping Assistant
Scottsdale, AZ · On-site
$20 - $22/hr
Medical
Dental
Vision
Life
Retirement
PTO
Headquartered in Scottsdale, AZ, CSN is one of the largest retail rare and collectible coin marketers in the United States. Built on a foundation of providing personalized service, CSN is committed ...
Quick apply
Entry Level Bookkeeping Assistant
Scottsdale, AZ · On-site
$20 - $22/hr
Medical
Dental
Vision
Life
Retirement
PTO
Headquartered in Scottsdale, AZ, CSN is one of the largest retail rare and collectible coin marketers in the United States. Built on a foundation of providing personalized service, CSN is committed ...
Class A CDL Owner Operators - Enclosed Auto Transport
Eloy, AZ · On-site
$400K/yr
We are seeking experienced Class A owner operators to join our top-notch team, delivering rare vehicles across the nation in our state-of-the-art enclosed car carriers. As an Intercity Lines owner ...
Class A CDL Owner Operators - Enclosed Auto Transport
Eloy, AZ · On-site
$400K/yr
We are seeking experienced Class A owner operators to join our top-notch team, delivering rare vehicles across the nation in our state-of-the-art enclosed car carriers. As an Intercity Lines owner ...
Rare information
What is the difference between Rare vs Data Analyst?
| Aspect | Rare | Data Analyst |
|---|---|---|
| Required Credentials | Typically requires specialized certifications or niche expertise | Usually requires a bachelor's degree in data science, statistics, or related field |
| Work Environment | Often in specialized industries or research settings | Commonly in corporate, finance, healthcare, and tech sectors |
| Employer & Industry Usage | Less frequently used, more niche | Widely used across multiple industries |
| Search & Comparison Intent | Less common, specific to niche roles | Commonly searched for career comparison and job opportunities |
The comparison shows that Rare often involves specialized skills and niche environments, whereas Data Analyst roles are more mainstream, with broader industry application and standard qualifications. Understanding these differences helps job seekers identify the right career path based on their skills and interests.
What is a rare job?
What are common challenges faced by rare disease research coordinators, and how can they be addressed?
What skills and qualifications are needed to thrive as a rare disease specialist?

Full-time
Posted 22 days ago
Job description
Department: PCMG-MAIN | Genetics
Location: Phoenix
Shift: Mon-Fri, Days, 8am-5pm
Category: Nursing
Posting #: 1047738
Employee Type: Full-Time
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 weekly to 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
- 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
About Phoenix Children's Hospital
Sourced by ZipRecruiter
Phoenix Children's Hospital, located in Phoenix, AZ, is a prominent establishment within the healthcare industry. Known for its commitment to pediatric healthcare, the hospital provides a vast range of services catering to the unique health needs of children. Originally founded in 1983, Phoenix Children's Hospital prides itself on being one of the largest and most respected children's hospitals in the country. Guided by its mission–"to provide hope, healing and the best healthcare for children and their families"–the hospital holds strong on its core values of family-centered care, excellence in clinical care, innovation, and stewardship.
Industry
Health care and social assistance
Company size
1,001 - 5,000 Employees
Headquarters location
Phoenix, AZ, US
Year founded
1983