Resources on rare epilepsies

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. 

In collaboration with EpiCARE clinicians, they prepared two kinds of documents : patient leaflets and journeys. The leaflets are a informative document about a specific diseases, in 2 parts: one for the patients and their carers and families, and one for healthcare professionals. 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. 

Rare epilepsies leaflets

Patient and caregivers leaflets are developed to give precise and accessible informations on rare and complex epilepsies. With one part for healthcare profesionnals, and one part for patients and their families or carers, these documents detail comprehensively what to expect when facing a rare epilepsy. 

Unless mentioned otherwise, all leaflets are in english. We are working on translating them in as many languages as possible with the help of patients associations all over Europe, so check back regularly!

Patients journeys

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 and 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 4 rare and complex epilepsies so far.

Read and download the following patients journeys :

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

journeys v2

Emergency Protocols

Other resources

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