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 focus on individual conditions within the ERN CRANIO scope. 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 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
Difficult Airway
Bas Pullens (ENT Surgeon Erasmus MC)
Leads:
This working group is focussed on difficult airway. 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 Deafness
Sandrine Malin (), An Boudewyns ()
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, Xenia Hermans
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, Sarah Versnel
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.
22q11
Michiel Houben (Peadiatrician
Leads:
This working group is focussed on 22q11. 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, Andres Rodriguez Lorenzo
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
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
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
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
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, Marie-Lise van Veelen
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, Desiree Derksen
Lead:
Radiologist working group
The Radiologists working group contributes to multiple key initiatives, such as creating educational resources, developing guidelines, and supporting clinical decision‑making tools.
Davide Brotto
Lead:
Psychologist working group
The Psychologists working group contributes to multiple key initiatives, such as creating educational resources, developing guidelines, and supporting clinical decision‑making tools.
Marizela Kljajic
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, Alexandra Topa
Lead:
Nurse specialist working group
The Nurse specialists working group contributes to multiple key initiatives, such as creating educational resources, developing guidelines, and supporting clinical decision‑making tools.
Elin Weisbach,
Lead:
Operation Room (OR) nurses working group
The Operation Room (OR) nurses working group contributes to multiple key initiatives, such as creating educational resources, developing guidelines, and supporting clinical decision‑making tools.
Esther Vermeer
Lead:
Anesthesiologist working group
The Anesthesiologists working group contributes to multiple key initiatives, such as creating educational resources, developing guidelines, and supporting clinical decision‑making tools.
Tbd
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.
Gareth Davies
Lead:
