Articles with "diagnostic odyssey" as a keyword



Photo from wikipedia

"Doctors can read about it, they can know about it, but they've never lived with it": How parents use social media throughout the diagnostic odyssey.

Sign Up to like & get
recommendations!
Published in 2021 at "Journal of genetic counseling"

DOI: 10.1002/jgc4.1438

Abstract: Parents of children with undiagnosed conditions struggle to obtain information about how to treat and support their children. It can be particularly challenging to find communities and other parents who share their experiences and can… read more here.

Keywords: social media; parents use; throughout diagnostic; use social ... See more keywords
Photo from academic.microsoft.com

The diagnostic odyssey: our family's story.

Sign Up to like & get
recommendations!
Published in 2021 at "American journal of human genetics"

DOI: 10.1016/j.ajhg.2021.01.003

Abstract: Danny is the father of two boys with MEPAN syndrome and a member of Global Genes' RARE Foundation Alliance Leadership Council. read more here.

Keywords: family story; odyssey family; diagnostic odyssey;