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A Qualitative Study to Characterize the Humanistic Burden of Kabuki Syndrome in the United States and Canada

INTRODUCTION: Kabuki syndrome is a rare congenital condition characterized clinically by unique facial features, abnormalities in the skeleton, finger pad abnormalities, and developmental delays, as well as a range of other health issues. Existing research lacks information on the daily burden of li...

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Detalles Bibliográficos
Autores principales: Theodore-Oklota, Christina, Hartman, Deborah S., Hoffman, Deborah L., Björnsson, Hans T.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8799562/
https://www.ncbi.nlm.nih.gov/pubmed/34843084
http://dx.doi.org/10.1007/s12325-021-01953-x