This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
The development of clearly defined, evidence-based future care pathways in rare disease faces multiple challenges related to prioritisation, minimum levels of care and fragmentation of services, with digital health presenting both opportunities and drawbacks
Figure 1.
Iceberg Model template used to identify events, patterns, structures and mental models in challenges for access equity.
Figure 2.
Infographic showing the patient journey to diagnosis in rare diseases, developed as part of the EURORDIS Solve-RD project [32]