ERN CRANIO WORKING GROUPS
Index
ERN CRANIO works through a number of specialised working groups that bring together clinicians, researchers, and patient representatives from across Europe. These groups collaborate to improve care, share expertise, and jointly work on different projects
There are two main types of working groups within ERN CRANIO. The first are the disease‑specific, or vertical, working groups. These vertical working groups are grouped into three workstreams. 1) Craniofacial Workstream lead by Marie-lise van Veelen- Vincent (Erasmus MC). 2) Cleft lip palate/ odontologic disorders, where the cleft is lead by Aebele Mink van de Molen (UMC Utrecht) and the odontologic disorders lead by Agnes Bloch-Zupan (University of Strasbourg). 3) ENT workstream lead by Bas Pullens (Erasmuc MC). The overall ERN structure can be found here. Alongside these, ERN CRANIO also has transversal, or horizontal, working groups.
Below you will find an overview of all working groups, along with additional information about their scope, aims, and ongoing activities.
Disease specific Working Groups
Congenital Deafness
Sandrine Malin (Clinical Geneticist at Hôpital Universitaire Necker Enfants-Malades , An Boudewyns (ENT Specialist at Antwerp University Hospital)
Leads:
This working group is focussed on congenital deafness. The group actively contributes to a range of initiatives, including the development of registries, clinical guidelines, decision support tools, and educational resources such as webinars.
Orodental
Agnes Bloch-Zupan (Professor in oral biology at Hopitaux universitaires de Strasbourg), Xenia Hermans (Dentist at Rigshospitalet, Coperhagen University Hospital )
Leads:
This working group is focussed on Orodental anomalies. The group actively contributes to a range of initiatives, including the development of registries, clinical guidelines, decision support tools, and educational resources such as webinars.
Cleft Lip and Palate
Aebele Mink van der Molen (Plastisch Surgeon at UMC Utrecht), Sarah Versnel (Plastic Surgeon at the Erasmus MC)
Leads:
This working group is focussed on Cleft Lip and Palate. The group actively contributes to a range of initiatives, including the development of registries, clinical guidelines, decision support tools, and educational resources such as webinars.
Pierre Robin
Corstiaan Breugem (Plastic surgeon Amsterdam UMC)
Leads:
This working group is focussed on Pierre Robin. The group actively contributes to a range of initiatives, including the development of registries, clinical guidelines, decision support tools, and educational resources such as webinars.
Congenital Facial Nerve Palsy
Marc Mureau (Plastic Surgeon at the Erasmus MC), Andres Rodriguez Lorenzo (Head of department Plastic & Maxillofacial surgery at Uppsala University Hospital)
Leads:
This working group is focussed on Congenital Facial Nerve Palsy. The group actively contributes to a range of initiatives, including the development of registries, clinical guidelines, decision support tools, and educational resources such as webinars.
Sygnathia
Eppo Wolvius (Maxillofacial surgeon at the Erasmus MC)
Leads:
This working group is focussed on Sygnathia. The group actively contributes to a range of initiatives, including the development of registries, clinical guidelines, decision support tools, and educational resources such as webinars.
Facial Dysostosis
Sarah Versnel (Plastic Surgeon at the Erasmus MC)
Leads:
This working group is focussed on Facial Dysostosis. The group actively contributes to a range of initiatives, including the development of registries, clinical guidelines, decision support tools, and educational resources such as webinars.
Craniosynostosis
Marie-Lise van Veelen - Vincent (Neurosurgeon at the Erasmus MC)
Leads:
This working group is focussed on Craniosynostosis. The group actively contributes to a range of initiatives, including the development of registries, clinical guidelines, decision support tools, and educational resources such as webinars.
Craniofacial Microsomia
Eppo Wolvius (Maxillofacial surgeon at the Erasmus MC)
Leads:
This working group is focussed on CFM. The group actively contributes to a range of initiatives, including the development of registries, clinical guidelines, decision support tools, and educational resources such as webinars.
Cross-Workstream Working groups
3D imaging working group
The 3D imaging working group contributes to multiple key initiatives, such as creating educational resources, developing guidelines, and supporting clinical decision‑making tools.
Tareq Abdel Alim (Postdoctoral researcher at the Erasmus MC) & Marie-lise van Veelen (Neurosurgeon at the Erasmus MC)
Lead:
Speech therapists working group
The Speech therapists working group contributes to multiple key initiatives, such as creating educational resources, developing guidelines, and supporting clinical decision‑making tools.
Sarah Haverkamp (Speech and Language Therapist at the UMC Utrecht) , Desiree Derksen (Speech and Language Therapist at the UMC Utrecht)
Lead:
Geneticist working group
The Geneticists working group contributes to multiple key initiatives, such as creating educational resources, developing guidelines, and supporting clinical decision‑making tools.
Wanda Lattanzi (Geneticist at Fondazione Policlinico Universitario A. Gemelli), Alexandra Topa (Geneticists at Sahlgrenska University Hospital)
Lead:
Patient-clinician engagement working group
The Patient-clinician engagement working group contributes to multiple key initiatives, such as creating educational resources, developing guidelines, and supporting clinical decision‑making tools.
Karen Wilkinson Bell (patient representative, headlines) & Katerina Papadopoulou (Psychologist at Childrens Health Ireland)
Lead:
