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:

  Name

  Representing

  Patient organisation

  Thomas Luck

  Craniofacial Microsomia

  The German Goldenhar family initiative 

  Zoe Luck  

  Craniofacial Microsomia

  The German Goldenhar family initiative

  Sara Pérez

  Craniosynostosis 

  APERTcras

  Sandra Möshe

  Craniosynostosis 

  EAS 

  Markus Richter  

  Craniosynostosis

  EAS 

  Jeroen van de       Koppel 

  Craniosynostosis

  Laposa

 

Cleft lip/palate and orodental anomalies:

  Name

  Representing

  Patient organisation

  Gareth Davies

  Cleft Lip/Palate

  European Cleft Organisation

 Elisa Nurmenniemi 

  Cleft Lip/Palate 

  SUHUPO (Society for Cleft patients in Finland)

  Phillipe Pakter

  Pierre Robin Sequence

 

 

ENT disorders:

  Name

  Representing

  Patient organisation

  Michel Francois

  Genetic hearing loss 

   ALPC

 

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 o.spivack@erasmusmc.nl for more information.