Patient Empowerment and Involvement in Research.
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DOI: 10.1007/978-3-319-67144-4_15
Abstract: Patients with rare diseases often face difficulties in clinical care due to the low prevalence of their diseases and the resulting healthcare professionals' lack of expertise. Valid and standardized guidelines for clinical management are also… read more here.
Keywords: research; rare diseases; involvement research; empowerment involvement ... See more keywords