Eurordis - Rare Disease Europe

Cite this poster

People living with a rare disease (PLWRD) have complex healthcare needs, namely access to continuous expert and integrated care. Patient experience with healthcare is a multidimensional concept spanning from relational interactions, e.g., did patients feel listened to during treatment, to clinical and organisational aspects, such as the facilities available. Patient experience with care is an increasingly valued healthcare quality indicator.

This poster describes key findings of a scoping literature review on the experiences of people living with a rare disease in secondary and tertiary healthcare settings. It collects and analysis data from 61 peer-reviewed papers and abstracts, and proposes a first structured definition of rare disease patient and carer experience of secondary and tertiary healthcare. It was conducted as part of the H-CARE project and presented at the European Conference for Rare Diseases and Orphan Products (ECRD) in May 2024. These findings have been published as a peer-reviewed abstract in a special ECRD issue of the Orphanet Journal of Rare Diseases.

Rita Francisco, EURORDIS-Rare Diseases Europe

Jessie Dubief, EURORDIS-Rare Diseases Europe

Jennifer Jones, Genetic Alliance UK

Michel Wensing, Heidleberg University

Rare Barometer is a not-for-profit survey initiative run independently by EURORDIS-Rare Diseases Europe.