Reducing complexity: explaining inborn errors of metabolism and their treatment to children and adolescents

Reducing complexity: explaining inborn errors of metabolism and their treatment to children and adolescents

Abstract Background Inborn errors of metabolism (IEM) are a group of rare, heterogeneous and complex genetic conditions. Clinically, IEM often affect the central nervous system and other organs. Some carry the risk of progression and / or potentially life-threatening crises. Many patients have to ad...

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Bibliographic Details
Main Authors: Nina A. Zeltner, Mendy M. Welsink-Karssies, Markus A. Landolt, Dominique Bosshard-Bullinger, Fabia Keller, Annet M. Bosch, Marike Groenendijk, Sarah C. Grünert, Daniela Karall, Beatrix Rettenbacher, Sabine Scholl-Bürgi, Matthias R. Baumgartner, Martina Huemer
Format: Article
Language:English
Published: BMC 2019-11-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Disease knowledge
Patient education
Processing fluency
Self-efficacy
Coping
Disease management
Online Access:http://link.springer.com/article/10.1186/s13023-019-1236-9

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http://link.springer.com/article/10.1186/s13023-019-1236-9

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