The European Reference Network for Craniofacial Anomalies and ENT disorders (ERN CRANIO) was officially established in March 2017 and is one of 24 European Reference Networks co-funded by the European Union (Health Programme). ERN CRANIO involves teams from 29 European hospitals from 11 Member States. Many European patients, particularly children, do not have access to the required care for their rare craniofacial anomaly and related disorders. Causes for inequality are; lack of awareness of these congenital anomalies, lack of knowledge about the treatment options, lack of access to relevant information for both patients and doctors, and lack of skills and facilities required to treat these conditions.

To counteract this inequality ERN CRANIO focuses on facilitating professionals throughout Europe to share gained knowledge on rare craniofacial anomalies and ENT disorders. Cooperation at EU level makes a real difference to these patients and the healthcare professionals helping them. No country alone has the knowledge and capacity to treat all types of rare, complex and low prevalence conditions, but with the cooperation and exchange of knowledge at European level through ERN CRANIO, patients across the EU will have access to the best expertise available.

The following objectives are defined for the CRANIO network:

  1. To establish and manage a steady referral network for patients with craniofacial anomalies; cleft lip/palate and orthodontologic anomalies; and ENT disorders throughout Europe;
  2. To improve the quality of care, by enhancing diagnosis, treatment and follow-up of the patients with rare craniofacial anomalies and ENT disorders;
  3. To minimize any deviations from our operational standards and to create best practices through suitable quality improvement initiatives, while monitoring their effectiveness using measures and indicators;
  4. To stimulate innovation through multicentre research projects on (genetic) causes, pathophysiology, and associated problems, and introduction of eHealth.
  5. To support the continuous learning and development of all our members by providing high quality educational and training opportunities to medical, nursing and other healthcare professionals;
  6. To disseminate gained knowledge throughout Europe and outside, making it available to all stakeholders;

The network activities in the first phase are aimed at setting up a steady referral network for patients with craniofacial anomalies and ENT disorders and identifying best practices in our network related to standards of care, outcome measurement and training. The network activities are grouped under six work packages; Management, Standards of Care, Outcome Measurement, eHealth, Training and Dissemination. This website will be used to share gained knowledge, latest news and upcoming events.