Information for patients

This page contains information that may be of importance to patients with a rare/complex craniofacial condition or ENT disorder, or for parents that have a child with one of these conditions.

WHAT WE DO

PATIENT-TAILORED GUIDELINES

ERN CRANIO works together with experts from the network to develop European standards of care. Patient- and family-friendly versions of these clinical guidelines have been developed by patient representatives from ERN CRANIO

PATIENT JOURNEYS

ERN CRANIO patient representatives have worked on developing ‘patient journey’ visuals, in collaboration with their wider patient community and with the support of EURORDIS.

ANIMATIONS

ERN CRANIO has developed multiple animations in collaboration with patients and clinicians in Europe.

CPMS

The Clinical Patient Management System (CPMS) is a web-based clinical software application allowing healthcare providers from all over the EU to work together virtually to diagnose and treat patients.

ERN CRANIO REGISTRY

ERN CRANIO is developing a registry focused on the outcome of treatment using standardised diagnosis specific outcome sets.