The Krabbe disease Patient Journey Map works by simplifying the two pathways of Krabbe disease: the symptomatic and the pre-symptomatic journey. The symptomatic pathway relates to patients who receive a diagnosis with the presentation of clinical symptoms such as, severe acid reflux, stiff muscles, seizures, loss of milestones, lower limb weakness, and more. The pre-symptomatic pathway relates to patients identified through newborn screening or those with a prior family history of Krabbe disease. Both pathways provide a systematic breakdown of steps and options for treatment, monitoring, and supportive care. The Patient Care Support Resources Map works to provide patients, caregivers, and the medical community a snapshot of what is available to assist them throughout their Krabbe disease journey. These resources are meant to give our newly diagnosed families and those working in the medical community the ability to comprehend their treatment options and quickly navigate support resources in a small amount of time.
Patient Journey
Patient Care Support
