Experts by experience

Patient representation is core to ERN CRANIO. The involvement of patient representatives in network activities is hugely valued. They are experts by experience.

Below are the patient representatives currently involved in the network.

Craniosynostosis and other craniofacial anomalies:

  Name

  Representing

  Patient organisation

  Thomas Luck

  Goldenhar Syndrome

  The German Goldenhar family initiative 

  Zoe Luck  

  Goldenhar Syndrome

  The German Goldenhar family initiative

  Sara Pérez

  Apert Syndrome

 

  Sandra Möshe

  Apert Syndrome

  EAS 

  Markus Richter

  Apert Syndrome

  EAS 

 

Cleft lip/palate and orodental anomalies:

  Name

  Representing

  Patient organisation

  Gareth Davies

  Cleft Lip/Palate

  European Cleft Organisation

  Phillipe Pakter

  Pierre Robin Sequence

  

 

ENT disorders:

  Name

  Representing

  Patient organisation

  Michel Francois

  Genetic hearing loss 

   ALPC