“I Felt Like a Lone Ranger”: Experiences of Australian Families Living with KIF1A-Associated Neurological Disorder

Abstract excerpt

<title>Abstract</title> <p> <italic>KIF1A-</italic> Associated Neurological Disorder (KAND) is a heterogeneous group of ultra-rare neurodegenerative conditions. Severe forms of KAND, classified within the broader category of childhood dementias, lead to progressive loss of motor, communication and motor skills with markedly reduced life expectancy. Although the disorder is genetically and clinically defined, li...

Topics

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• Caregivers
• Chromosome Deletion
• Chromosomes, Human, Pair 9
• Cohort Studies
• Craniofacial Abnormalities
• Heart Defects, Congenital
• Intellectual Disability
• Prevalence

Identifiers and source

Literature Corpus work

c08d2112-148c-53f2-bc29-0e9eb2ff7df0

DOI

10.21203/rs.3.rs-9157859/v1