EpiCARE’s ePAG, the patient representatives, care to produce documents to help patient through their diagnosis, their communications with healthcare professionals and even with their close ones. They prepared patient leaflets and journeys.
We are glad to share here two kind of documents : patient leaflets and journeys. First the leaflets, which are full of information about specific diseases. In each leaflet, you will be able to learn about the prevalence, diagnosis, treatment options… of rare and complex epilepsies. Secondly, patients journeys are also being developped. They illustrate the journey through the diagnosis, providing a kind of map from the perspective of those living with a rare and complex epilepsy.
These documents are being developed progressively. New ones should be added soon. In order to stay informed, visit our website regularly.
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. In consequence, they 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 3 rare and complex epilepsies so far.