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’). ERNICA seeks to involve its ePAG to ensure the patient voice is heard throughout the ERN development process. 

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

ERNICA ePAG patient representatives:

 Patient organisation

 Representative

 Representing

 EAT

 Graham Slater

 Esophageal Atresia 

 EAT

 Anke Widenmann-Grolig

 Esophageal Atresia 

 EAT

 JoAnne Fruithof

 Esophageal Atresia 

 CDH UK

 Beverley Power

 Congenital diaphragmatic hernia

 SoMA

 Nicole Schwarzer

 Hirschsprung Disease 

 SoMA

 Annette Lemli

 Hirschsprung Disease 

 Amorhi

 Duccio Cavalieri

 Hirschsprung Disease 

 

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

Please contact ERNICA project manager Olivia Spivack for more information: o.spivack@erasmusmc.nl