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.
Photo by Chris Montgomery on Unsplash
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,
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