The term ePAGS refers to European Patients Advocacy Group. They were created by EURORDIS as the way to include patient associations in the ERNs decision-making processes. ePAGs bring together elected patient advocates and affiliated organisations who will ensure that the patient voice is heard throughout the ERN development process. For more information on ePAGs, you can visit Eurordis's website.
The patient advocates also produce deliverables to support patients and their families and to facilitate communication between them and the healthcare professionals.
The EpiCARE Patient Working Group comprises ePAG (European Patient Advocacy Group), Patient Advocates who are either leaders in rare and complex epilepsy patient organisations from across Europe, or patients themselves.
This group enables EpiCARE patient representatives to work together on common issues, and are involved in all EpiCARE activities.