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.
Read the Original
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.
You can read the full text:
The following have contributed to this page