As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models, taking ownership of their own care. This change can seem daunting for patients and parents, especially when dealing with rare disorders that involve multiple specialists that may be part of a care team.
This webinar shows viewers how to plan for this change and shares the first-hand experience of a family living with congenital bilateral perisylvian syndrome (CBPS).
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Transitioning to Adult Care
Теги
national organization for rare disordersnordrare diseaserare disorderseducationaleducatemedicalmedicinewebinarresourceadult caretransitioningpatientphysicianrare diseasesrare disorderpediatricspediatricJulie CorderRNCNPNurse PractitionerPediatric Complex CareCaregiverMDPhDPatient AdvocateCleveland ClinicLinda Hampton StarnesMarvin Natowicz