ERNICA Membership
ERNICA consists of a total of 39 full members, 13 National Coordination Hubs or Associated National Centers (Affiliated Partners), 2 Supporting Partners and 16 patient representatives.
Full Members
What makes ERNICA hospitals experts in Europe?
ERNICA 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 disorder, and generally consist of the following:
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Number of patients they treat each year with a specific condition that falls under ERNICA
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Number of new patients with a specific condition that falls under ERNICA
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Number of procedures they perform on patients with a specific condition that falls under ERNICA
Altogether, when centres have a national endorsement from their Ministry of Health, they can apply for a membership with ERNICA 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:
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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
Supporting partners are healthcare providers, medical societies, and any other entity or individual which, without having a commercial relation with the ERNs and their Members or Affiliated Partners, or with the European Commission, contribute in different ways to the work of the network. ERNICA has two supporting partners: European Paediatric Surgeons’ Association (EUPSA) and the European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN).
EUPSA
ERNICA and EUPSA work together as Supporting Partners. EUPSA is therefore officially recognised by ERNICA as a Supporting Partner and ERNICA affirms its commitment to work in collaboration with EUPSA for the benefit of patients with rare inherited congenital anomalies under the coordination of the ERNICA coordinator and coordinating centre. EUPSA and ERNICA are represented at each other’s annual meetings, are present in each other’s network meetings, and work together on consensus statement projects and joint educational initiatives. Also, ERNICA and EUPSA support each other by allowing relevant information to be disseminated through their communication channels, including via the joined StayCurrent Pediatric Surgery Application. More information on EUPSA can be found here (https://www.eupsa.info/).
EURORDIS
ERNICA has signed a supporting partnership agreement with EURORDIS rare diseases Europe. EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. More information on EURORDIS can be found here (Home - EURORDIS)
ESPGHAN
ESPGHAN is officially recognised by ERNICA as a Supporting Partner and ERNICA affirms its commitment to work in collaboration with ESPGHAN for the benefit of patients with rare inherited congenital anomalies under the coordination of the ERNICA coordinator and coordinating centre. ERNICA and ESPGHAN have agreed to work in collaboration, where possible, on areas of common strategic interest. ESPGHAN and ERNICA are represented at each other’s annual meetings. ERNICA will ensure its transversal (cross-disease) working groups maintain links with ESPGHAN on areas of common interest. ERNICA and ESPGHAN meet on a regular basis to discuss dissemination opportunities, educational initiatives, and scientific projects. More information on ESPGHAN can be found here (https://www.espghan.org/).
ESPEN
The European Society for Clinical Nutrition and Metabolism (ESPEN) is officially recognized by ERNICA as a Supporting Partner. ERNICA and ESPEN have committed to collaborating where possible on shared strategic priorities. Representatives from both organizations participate in each other’s annual meetings. ERNICA will ensure its transversal (cross-disease) working groups maintain connections with ESPEN in areas of mutual interest. Additionally, ERNICA and ESPEN hold regular meetings to explore opportunities for dissemination, educational initiatives, and scientific projects. More information about ESPEN can be found here (ESPEN - The European Society for Clinical Nutrition and Metabolism).
Patient representatives
In 2015, the European Commission Expert Group on Rare Diseases published an Addendum to their 2013 ERN recommendations which formally recognised the value patient representatives can bring to the ERNs by being involved in their decision and opinion making structures. In 2016, EURORDIS and the European rare disease community established 24 European Patient Advocacy Groups (ePAGs) aligned to the clinical scope of each ERN.
The ERNICA European Patient Advocacy Group (ePAG) is comprised of Associated partner patient organisations and their ePAG advocates (/patient representatives). Patient organisations that meet the following requirements may apply and be invited by the ERN Coordinator in agreement with the ePAG lead, on behalf of the ePAG, to join ERNICA as Associate partners:
1. The organisation is legally registered and operates in Europe (48 countries as defined by EURORDIS based on definitions by the EU, the Council of Europe and the WHO-Europe), representing patients and families living with a rare disease that belong to the scope of ERNICA. This registration requirement can be waived in exceptional cases, due to the particularity of patient-driven organisations and of rare diseases, as well as for historical or contextual reasons.
2. Has a governing board made up of a majority patients or of family members of patients. This requirement can be waived in exceptional cases, due to the particularity of patient-driven organisations and of rare diseases, as well as for historical or contextual reasons.
3. Is financially independent, particularly from the pharmaceutical industry (max. 50% of funding from several companies).
4. Holds non-profit status.
5. Has proven activities such as patient support and/or advocacy activities and/or research.
As part of the application process, these patient organisations will formally endorse an ePAG advocate to be active in ERNICA working groups. They will represent the voice and interests of all patients that fall under the scope of the ERN, beyond their own disease. If the application is successful, ERNICA and the patient organisation will sign an Associate Partnership Collaboration Agreement.
Patient organisations/patient representatives interested in being involved in ERNICA can contact Sara Roman Galdran (project manager) for more information: s.romangaldran@erasmusmc.nl
APEHDia
APEHDia, the main French charity dealing with Congenital Diaphragmatic Hernia (CDH), works very closely with the French scientific and medical community, provides emotional and financial support to families with facing a CDH diagnosis and encourages and funds research.
CDH Sverige (Sweden)
CDH Sverige is a national non-profit organisation that aims at improving life conditions for children, youngsters and adults living with Congenital Diaphragmatic Hernia (CDH) as well as their relatives, by, for instance, spreading knowledge and a building a CDH community in Sweden.
Platform CHD
PlatformCHD is an association that helps people in the Netherlands and Belgium who are affected by Congenital Diaphragmatic Hernia (CDH) by organising national and international conferences and fundraising events, acting as a resource and promoting research on the broader aspects of CDH.
