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.

ERN CRANIO RECOGNIZED HOSPITALS

ERN CRANIO full members are required to meet a general and network-specific criteria and obtain endorsement from their national ministry of health to apply for full membership. After agreement by the EU, full membership can be awarded. Important criteria determine whether centres have enough expertise for a certain rare and/or complex craniofacial anomaly or ENT disorder, and generally consist of the following:

Number of patients they treat each year with a specific condition that falls under ERN CRANIO
Number of new patients with a specific condition that falls under ERN CRANIO
Number of procedures they perform on patients with a specific condition that falls under ERN CRANIO

Altogether, when centres have a national endorsement from their Ministry of Health, they can apply for a membership with ERN CRANIO if the European Commission opens up a European call to join any of the 24 ERNs. At this moment, it is not known when or whether a new call will be opened to join ERNs.

Patient representatives

In 2016, EURORDIS and the European rare disease community established 24 European Patient Advocacy Groups (ePAGs) aligned to the clinical scope of each ERN. A European Patient Advocacy Group (ePAG) is a patient forum comprised of patient organisations (‘ePAG community’) and their appointed patient representives (referred to by EURORDIS as ‘ePAG advocates’). ERN CRANIO seeks to involve its ePAG to ensure the patient voice is heard throughout the ERN development process.

The role of an ERN CRANIO patient representative is to represent the voice and interests of their patient community and act as the bridge between this community and the ERN.

WHAT WE DO

Patients and patient groups work alongside doctors in ERN CRANIO in order to ensure that the patient perspective becomes an integral part of overall care.

If you would be interested in learning more on how you or your (informal) patient organisation can be involved, please contact ern-cranio@erasmusmc.nl.

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 PATHWAY

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

PATIENT-TAILORED VIDEOS

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