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Navigating Medical Complexity Coping With Loss Neurojourney

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Home > Receiving The Diagnosis > Themes

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Theme: Receiving the Diagnosis

When the genetic condition is VERY rare and the delivered prognosis is very vague.

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When the genetic condition is VERY rare and the delivered prognosis is very vague.

When the genetic condition is VERY rare and the delivered prognosis is very vague.

The mother and father of a son born with an extremely rare genetic condition talk about what made the delivery of their son’s diagnosis so ambiguous and their desire for concrete answers from the medical team.

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