A scoping review of health literacy in rare disorders: key issues and research directions.
Una StenbergLydia WestfalAndreas Dybesland RosenbergerKristin ØrstavikMaria FlinkHeidi HolmenSilje SystadKarl Fredrik WestermannGry VelvinPublished in: Orphanet journal of rare diseases (2024)
This review emphasizes the importance of reinforcing health literacy among persons with rare disorders through peer support and education. This is the first review to give a comprehensive and state-of-the-art overview of literature investigating health literacy among persons with rare disorders and offers a basis for further research.