Job Description

The Spina Bifida (SB) Specialty RN Care Coordinator will coordinate team-based care to provide comprehensive support and guidance to patients with chronic diseases that require specialty care, including those with spina bifida AKA spinal dysraphism, and acquired Spinal Cord Injury (SCI) in a multidisciplinary treatment setting through effective partnerships with the PCP, Specialty departments, community resources, and medical professionals, the patient's medical home team, and the Nemours organization. Supports all multidisciplinary teams providing care for spina bifida (SB) patients, including Orthopedics, Neurosurgery, Urology, and PM&R



The nursing process will be used to assess, plan, implement, and evaluate patients' care, considering the appropriate use of resources. The Care Coordinator works in the ambulatory setting and serves as a vital link between patients, healthcare providers, community resources, support groups, and other relevant organizations to enhance patients' access to education, counseling, and ongoing support beyond the clinical setting.




They assist patients and families to ensure both medical and psychosocial needs are met to promote health and well-being. They address gaps in care and promote timely access to appropriate care, increasing the utilization of preventative care and healthy behaviors to improve the health of the population at risk. This role also coordinates the transition to adult healthcare providers.



The ideal candidate should have excellent communication and patient/family education skills, strong organizational abilities, and a passion for improving the health and well-being of individuals with SB. The goal of this role is to prioritize patients' functional independence.

Essential Functions

Serve as the primary point of contact for patients undergoing specialty services, including but not limited to orthopedics, neurosurgery, urology and PM&R programs and treatment, providing personalized support, education, and assistance.

Collaborate with community resources, support groups, and other relevant organizations to enhance patients' access to education, counseling, and ongoing support beyond the clinical setting.

Assist in coordination of appointments, consultations, and diagnostic tests for patients, ensuring timely access to necessary healthcare services.

Educate patients on chronic disease management, focusing on spina bifida and associated conditions, treatment options, dietary guidelines, and lifestyle modifications, empowering them to actively participate in their care.

Facilitate Communication and collaboration between patients and multidisciplinary healthcare teams, including surgeons, specialty providers, primary care providers, dietitians, psychologists, and other specialists. + Collaborates with the orthopedic team to ensure that any necessary non-orthopedic studies or rehabilitation needs are completed.
+ Meets with external institutions to provide education on the unique needs of individuals with SB.
+ Leads a monthly multidisciplinary meeting to review patients seen in the past month and prepare for upcoming patients, ensuring all outstanding needs are addressed.
Assist patients in navigating the healthcare system, including but not limited to navigating insurance coverage and financial resources for children with spina bifida, advocating for their needs, and facilitating access to necessary support services.

Provide ongoing counseling and support to patients, addressing concerns, answering questions, and offering encouragement throughout their journey.

Assist in coordinating pre-clinic and post-clinic care for patients undergoing surgical procedures, including urologic, orthopedic, and neurosurgical surgery, as well as other specialty services, to ensure they receive comprehensive support and follow-up care.

Collaborate with community resources, support groups, and other relevant organizations to enhance patients' access to chronic disease education, counseling, and ongoing support beyond the clinical setting.

Maintain accurate and up-to-date documentation of patient interactions, treatment plans, and outcomes in EPIC (Electronic Medical Record- EMR)

Additional miscellaneous duties and responsibilities, as may be assigned from time to time by the employee's supervisor.



Bachelor's Degree in Nursing Required



RN Required



Minimum of 3 years of experience in care coordination, preferably in pediatric healthcare setting.



Inpatient/outpatient nursing, care, case or care management experience is preferred



Spina Bifida knowldege is preferred