Care Team, Therapy & Support
Care coordinator (case manager)
A care coordinator helps families organize and navigate the many appointments, specialists, and services involved in their child's care.
In short: Care coordinator (case manager)
- They help organize appointments and communication among specialists.
- They support families in navigating complex care.
- They can connect families to resources and services.
- They are a helpful point of contact in multidisciplinary care.
What it is
It is a person — sometimes called a case manager — who helps families organize and navigate the many parts of their child's care, including appointments, specialists, and services. They serve as a coordinating point of contact.
Understanding Care coordinator (case manager)
Because encephalocele care can involve many specialists and services, a care coordinator helps families keep track of appointments, supports communication among the team, and can connect families to resources such as therapies, support services, and financial or logistical help. They ease the burden of navigating complex care, so families can focus on their child. A care coordinator is especially valuable in multidisciplinary care, where many moving parts need to be organized.
Why it matters
Understanding the care coordinator's role helps families see that support is available for navigating complex care — organizing appointments, easing communication, and connecting them to resources — so the journey feels less overwhelming.
Common questions
What does a care coordinator do?
Helps families organize and navigate their child's care.
How can they help?
By organizing appointments, supporting communication, and connecting to resources.
Why are they valuable?
They ease the burden of navigating complex, multidisciplinary care.
Bottom line
A care coordinator helps families organize and navigate the many parts of their child's care, easing the journey. ## References & Trusted Sources The definitions in this library reflect general, widely accepted medical information about encephalocele drawn from reputable sources, including: - Centers for Disease Control and Prevention (CDC) — data on neural tube defects, including prevalence and outcome statistics for encephalocele. - National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH) — overviews of encephalocele and related neurological conditions. - StatPearls (National Center for Biotechnology Information, NCBI Bookshelf) — peer-reviewed clinical summaries of encephalocele, its types, diagnosis, and management. - Cleveland Clinic — patient-education material on encephalocele. - Children's Hospital of Philadelphia (CHOP) — information on encephalocele diagnosis and treatment. - Boston Children's Hospital — information on encephalocele and craniofacial care. - Nationwide Children's Hospital — patient-education resources on encephalocele. - National Organization for Rare Disorders (NORD) — information on encephalocele and associated rare syndromes. - Peer-reviewed medical literature — studies on encephalocele types, surgical approaches (including endoscopic repair and reported recurrence rates), associated conditions, and outcomes. A note on statistics: Figures cited in this library (such as prevalence of roughly 1 in 9,000–10,000 U.S. births, a reported survival of around 55% for large encephaloceles, and endoscopic recurrence of roughly 5–9%) are population-level statistics drawn from studies of groups of patients. They describe groups, vary across reports, and do not predict the outcome for any individual child. A child's own care team, with full knowledge of the specific diagnosis and findings, is always the best source of information about that child's situation. A note on this library's purpose: These entries are educational and general. They are intended to help families understand the terms they encounter, not to provide medical advice, diagnosis, or treatment for any individual. Always discuss your child's specific situation with your care team.
Browse all 265 Encephalocele definitions
Read the Encephalocele patient guides
Not sure which page you need? Put words to it with the symptom navigator