Caregivers’ experiences and challenges of the diagnostic odyssey in Dravet syndrome

Caregivers’ experiences and challenges of the diagnostic odyssey in Dravet syndrome

Abstract Background Although the genetic background of Dravet syndrome (DS) has been determined and is clearly described, and genetics tests that support a clinical diagnosis are available, DS diagnosis is often based on the clinical assessment alone, which may lead to a late or missed diagnosis. Th...

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Bibliographic Details
Main Authors: Jan Domaradzki, Dariusz Walkowiak, the Association for People with Severe Refractory Epilepsy Dravet.pl
Format: Article
Language:English
Published: BMC 2025-05-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Diagnostic delay
Diagnostic odyssey
Dravet syndrome
Family caregivers
Parent survey
Parents experiences
Online Access:https://doi.org/10.1186/s13023-025-03772-7
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https://doi.org/10.1186/s13023-025-03772-7

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