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Uncertainty, certainty and hope for parents of children with rare neurological disorders

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Many of the readers will have managed a child with a rare complex neurodevelopmental disorder and supported the family as they have progressed on their journey. Where rare or undiagnosed conditions exist, there may be many uncertainties and these can have a huge impact in the family and how the clinician interacts with the family. The Archivist really enjoyed reading a series of three papers published in Journal Paediatrics and Child Health 2022; 58(10):1718–1728. The first paper examines the concepts of ‘uncertainty’ (old and new) (Palmer E et al JPCH in the aspects of clinical care for these children. …

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