Current management of primary mitochondrial disorders in EU countries: the European Reference Networks survey.

Michelangelo MancusoPiervito LoprioreCostanza LampertiThomas KlopstockShamima RahmanLaura LicchettaCornelia KornblumSaskia B WortmannHélène DollfusMaria T PapadopoulouAlexis ArzimanoglouMaurizio ScarpaHolm GraessnerTeresinha Evangelista

Published in: Journal of neurology (2023)

This survey provides information on the current difficulties in the care of PMDs in Europe. We believe that the results of this survey are important to help rare disease stakeholders in European countries identify key care and research priorities.

Keyphrases

healthcare
cross sectional
palliative care
quality improvement
pain management
social media