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Lived experiences of genetic diagnosis for rare disease patients: A qualitative interview study

2023-09-22

Abstract excerpt

<title>Abstract</title> <p><bold>Background</bold> Genetic diagnosis is often understood as a single event within the care pathway of rare disease patients. Legal, policy and ethical scholarship focusing on rare diseases and genetic information discusses questions of how to best deal with the process of genetic diagnosis and the communication of genetic information within a given health system. We co-created a re...

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Literature Corpus work: 33e248c6-9f0f-5786-ac74-587079123b3a
DOI: 10.21203/rs.3.rs-3261806/v1

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