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.

  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

  Vorsitzende der Elterninitiative Apert Syndrom und verwandte Fehlbildungen e.V.

  Markus Richter

  Apert Syndrome

  Vorsitzende der Elterninitiative Apert Syndrom und verwandte Fehlbildungen e.V.

  Gareth Davies

  Cleft Lip and Palate

  European Cleft Organisation

  Philippe Pakter

  Pierre Robin Sequence

  Stichting Pierre Robin Europe