Rare epilepsies patient’s journeys describe the specific needs and goals of a patient’s path for a rare or complex Epilepsy. They describe the health-care pathway, provide a key perspective of those living with a rare disease, and allow for a constructive discussion between clinicians and patients.

The ePAG advocates made these journeys available by mapping the needs and expectations for each stage of the care pathway, for 2 rare and complex epilepsies so far.

Please note that these documents are being developed progressively. We will add more regularly.

In order to stay informed, visit our website regularly.


Read and download the patients’ journey of: