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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. 

Full members

ERN CRANIO has 35 full member hospitals across 15 countries. 

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.

Affiliated partners

ERN CRANIO has 7 Affiliated partners, which are either Associated National Centres or National Coordination Hubs.

 

Affiliated partners are designated on a national level but were not required to meet the same criteria as ERN members.

Supporting partners

ERN CRANIO has 4 Supporting partners.

 

Supporting partners are healthcare providers, medical societies, and other entities/individuals, without a commercial relation with the ERN. They do not meet the criteria for full membership nor affiliated partnership.

Patient representatives

ERN CRANIO has 8 patient representatives in the European Patient Advocacy Groups (ePAGs).

 

This is a patient forum comprised of patient organisations and their appointed patient representatives.

Full Members

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.

Affiliated Partners

There are two types of affiliated partner:

  1. 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.

Supporting partners

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”.

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.

ALA

Jana Angelova represents people with a cleft lip/palate within the ERN CRANIO network.

Les p'tits courageux

Virginie Kauffman represents people with a syndromic craniosynostosis within the ERN CRANIO network.

ALPC

Michel Francois represents people with genetic hearing loss in the ERN CRANIO network.

Pierre Robin Europe

Philippe Pakter represents people with the Pierre Robin Sequence within the ERN CRANIO network.

European Cleft Organisation

Gareth Davies represents people with a cleft lip or cleft lip and palate within the ERN CRANIO network.

LAPOSA

Mariët Faasse represents people with craniofacial anomalies and craniosynostosis within the ERN CRANIO network.

Rare Diseases Croatia

Ivana Marinac represents people with craniosynostosis and craniofacial anomalies (specifically facial dysostosis) within the ERN CRANIO network.

Elterninitiative Apert-Syndrom

Sandra Mösche represents people with Apert Syndrome within the ERN CRANIO network.

Association mille et une Têtes

Anne-Sophie Mercey-Jarosz represents people with craniofacial anomalies and craniosynostosis within the ERN CRANIO network.

Headlines UK

Karen Wilkinson-Bell represents people with a craniosynostosis within the ERN CRANIO network.

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