Patient empowerment

EpiCARE Patient Advocacy Group (EPAG) for epilepsy care are an independent body of patient representatives, who are either leaders in rare and complex epilepsy patient organisations from across Europe, or patients themselves. The group currently consists of 15 members (https://epi-care.eu/epicare-patientrepresentatives/), from various European countries representing different conditions. They are the voice of patients for EpiCARE, produce deliverables to support patients and their families, facilitate communication between patients and healthcare professionals.

The patient empowerment working groups main mission is to better coordinate interactions between the patient advocates group and the EpiCARE medical teams by:

– Reinforcing the links between existing and under development federations and associations of patients with rare and/or complex epilepsies, the EU chapters of the International Bureau for Epilepsy (IBE) and the ERN EpiCARE community.

– Supporting the patient associations to better defend the need for national and EU plans for epilepsy care. This is of particular importance in the coming years – in a joint effort with EpiCARE and the European chapters of the ILAE and the IBE – aiming to adapt and implement in Europe the Intersectoral Global Action plan (iGAP) on «epilepsy and other neurological disorders (2022-2031) adopted by the WHO Assembly.

– Incorporating the voice of patients from the different EpiCARE WGs and collaborating to develop information, dissemination, guidelines, and support to research projects.

-Pursue, in collaboration with EpiCARE experts, with projects that increase disease knowledge for patients, families and non-expert treating physicians such as: Webinars, definition of Patients Journeys, Leaflets, and publications in scientific journals.