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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…
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Keywords:
social media;
parents use;
throughout diagnostic;
use social ... See more keywords
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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.
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Keywords:
family story;
odyssey family;
diagnostic odyssey;