A patient representative to a specific European Reference Network who has been endorsed by an ERN Associate Partner-Patient Organisation to be active in the ERN governance structure including its working groups. For the purpose of this framework, the terms ePAG advocate, patient representative and patient advocate are used interchangeably.
A patient group, specific to each European Reference Network, composed by patient advocates that have been endorsed by a Patient Organisation established by EURORDIS to optimise patient involvement in the ERNs’ decisions and activities. ERKNet has formally recognised these groups as part of its governance structure. The overarching objective of the ePAG is to ensure that the needs of people living with rare and complex conditions covered by the ERN are included in its strategic and operational delivery.
More information and a glossary on the EURORDIS website: