ERN CRANIO memberships
ERN CRANIO consists of a total of 35 full members, 7 National Coordination Hubs or Associated National Centre (Affiliated Partners), 4 Supporting Partners, and 8 patient representatives.
What makes ERN CRANIO hospitals experts in Europe?
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.
There are two types of affiliated partner:
Associated National Centre:
An Associated National Centre is a healthcare provider with at least some special expertise matching the global thematic domain of a given reference network that concentrates primarily on the provision of healthcare directly related to the activities and services of this specific network, including any type of diagnostic contribution supporting this provision of healthcare.
2. National Coordination Hub:
A National Coordination Hub is a healthcare provider that can link the national healthcare system to a number or all European Reference Networks. National Coordination Hubs function as interfaces between the national healthcare system and those Networks where a given Member State is neither represented by a full member nor by an Associated National Centre. National Coordination Hubs do not need any specific medical expertise.
The term Supporting Partner is used as a generic term to “define healthcare providers, medical societies, and any other entity or individual which, without having a commercial relation with the ERNs and their Full Members or Affiliated Partners, or with the European Commission, contribute in different ways to the work of the networks. When using the term Supporting Partner it shall be clear that it refers to a collaboration with entities and individuals which are neither Full Members nor Affiliated Partners”.
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.