What is it about?

We advocate for a deliberate paradigm shift towards virtual family meetings as ecological platforms to enroll and assess individuals with rare disorders.

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Why is it important?

Such a shift is crucial to substantially increasing geographical and age range coverage, which are essential for capturing the phenotypic variations in rare diseases.

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This page is a summary of: Deliberate paradigm shift in research in rare neurodevelopmental disorders, Orphanet Journal of Rare Diseases, June 2021, Springer Science + Business Media,
DOI: 10.1186/s13023-021-01885-3.
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