Addressing the need for patient-friendly medical communications: adaptation of the 2019 recommendations for the management of MPS VI and MPS IVA.

Iain A BruceFatih S EzgüChristoph KampmannVladimir KenisWilliam MackenzieBob StevensRobert WalkerChristian J Hendriksz

Published in: Orphanet journal of rare diseases (2022)

The use of patient-friendly materials, like the infographics we have developed, has the potential to better inform patients and engage them in their care. We issue a "call to arms" to the medical community for the development of similar PLS materials in rare diseases intended to inform and empower patients.

Keyphrases

end stage renal disease
healthcare
chronic kidney disease
newly diagnosed
peritoneal dialysis
prognostic factors
case report
mental health
palliative care
risk assessment
low cost
human health
patient reported