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“How can we help our children if no one's helping us?”: Mental health support priorities for the parents of children with rare genetic conditions and the clinicians responsible for their care – a framework analysis

2025-06-28

Abstract excerpt

<p>Background Next-generation sequencing technologies are now routinely used in the NHS to identify rare genetic conditions (RGCs) in children with intellectual and developmental disabilities (IDDs). As such, the proportion of children diagnosed in early childhood (<6years) is rising rapidly. The risk of mental health conditions in this group is high, however anecdotal accounts suggest little mental health supp...

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Literature Corpus work: 320c9128-5d09-5486-886a-f4561eb825f3
DOI: 10.31234/osf.io/7me42_v1

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