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Community-Based Participatory Research Disabled Children Genetic disorders in children Patients Family relationships Niemann-Pick Disease, Type C therapy Niemann-Pick diseases Treatment Parent-Child Relations Parents Parents of children with disabilities Rare diseases Patients Rare Diseases therapyFilter By Authors
Marcus, Amy DockserFilter By Genres
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Community-Based Participatory Research Disabled Children Genetic disorders in children Patients Family relationships Niemann-Pick Disease, Type C therapy Niemann-Pick diseases Treatment Parent-Child Relations Parents Parents of children with disabilities Rare diseases Patients Rare Diseases therapyFilter By Authors
Marcus, Amy DockserFilter By Genres
bibliographyMarcus, Amy Dockser
Summary: "Pulitzer Prize-winning reporter Amy Dockser Marcus shows what happened when a group of parents joined forces with doctors and researchers to try to save children's lives. Parents whose children had been diagnosed with the rare and fatal genetic condition Niemann-Pick Type C disease recognized there would never be a treatment in time to save their children if things stayed the same, so the...
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Publisher / Publication Date: Riverhead Books 2023
Copies Available at Woodmere
1 available in Adult Non-fiction, Call number: 618.92 MARchat loading...