Patient representatives

In 2016, EURORDIS and the European rare disease community established 24 European Patient Advocacy Groups (ePAGs) aligned to the clinical scope of each ERN. A European Patient Advocacy Group (ePAG) is a patient forum comprised of patient organisations (‘ePAG community’) and their appointed patient representives (referred to by EURORDIS as ‘ePAG advocates’). ERN CRANIO seeks to involve its ePAG to ensure the patient voice is heard throughout the ERN development process. 

The role of an ERN CRANIO patient representative is to represent the voice and interests of their patient community and act as the bridge between this community and the ERN.

ERN CRANIO ePAG patient representatives:

Craniosynostosis and other craniofacial anomalies:

Cleft lip/palate and orodental anomalies:

ENT disorders:

ERN CRANIO is also open to engaging with patient groups not part of the ‘ePAG community’ and individuals not appointed as ERN CRANIO patient representatives.

Please contact ERN CRANIO Project Manager j.steerneman@erasmusmc.nl for more information.