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Rare craniofacial anomalies and ENT disorders [CRANIO] [739518] - Framework Partnership Agreement
Project abstract

This is the application for the ERN on Rare craniofacial anomalies and ENT disorders.

24 experts centers from 10 countries will join in this project, focusing on three major workstreams:
1. Craniofacial anomalies
2. Cleft lip/palate and odontologic disorders
3. ENT disorders

Aim is to make high level quality of care for craniofacial anomalies and ENT disorders available to all European citizens. This will be achieved by upgrading the service level for specific conditions provided by the ERN members, and by establishing craniofacial centers in countries that currently lack this care. The work group will incorporate professionals, relevant scientific societies and representatives from patient's societies.
The workplan involves assessment of available guidelines, develop missing ones, share experiences with teaching and training and making them available for those that request it, support travelling of the professionals with high level expertise to help out teams that lack this expertise, promote colaboration with regard to research. Where possible, data will be collected in a uniform way (mainly based on the principle of the ICHOM consortium) to enable benchmarking and promote implication of best practice at all centers. All knowledge will be shared at national, European and worldwide levels.