Types of Affiliation
There are four possible types of affiliation with the ERN RARE-LIVER for healthcare providers: Full Membership, Affiliated Partnership (including Associated National Centres and Coordination Hubs), Collaborative Partnership or the External Expert Status.
Full Membership and Affiliated Partnership are types of affiliation formally recognised by the European Commission’s department responsible for EU policy on food safety and health (DG Santé). An overview of the features of the different types of affiliation is provided below.
Full Membership
A Full Member of a European Reference Network (ERN) is a healthcare provider or centre of expertise that has been formally assessed and approved by the European Commission and the ERN Board of Member States to join one of the 24 thematic ERNs. Full Members are considered centres of clinical excellence in rare, low-prevalence, or complex diseases.
To obtain full membership, healthcare providers must meet both general and network-specific criteria and receive endorsement from their national ministry of health. Following approval at the EU level, full membership is granted. Full Members function as the primary clinical nodes of the network. Their roles include for example:
- Virtual Consultations: Actively reviewing and discussing patient cases with other members via the CPMS.
- Guideline Development: Contributing to the creation and implementation of clinical practice guidelines.
- Education and Research: Participating in training activities and joint research projects.
- Governance: Having the right to participate in the Board of the ERN, which governs the network.
Affiliated Partnership
Affiliated Partners (APs) are healthcare providers connected to European Reference Networks (ERNs), particularly in countries without a member in a specific network. They actively contribute to network activities, benefit from the exchange of expertise, and facilitate the dissemination of knowledge across the EU. At the same time, they serve as key entry points for patients, thereby improving access to specialised care. Their designation is carried out by Member States through transparent procedures, and their participation is guided by clear strategies and rules to ensure meaningful engagement within the networks.
In contrast, Associated National Centres participate in only one network and are defined as healthcare providers with specialised expertise aligned with the thematic domain of the respective reference network.
Collaborative Partnership
A Collaborative Partnership represents a different form of engagement, which does not confer ERN Centre status but enables partners to participate in selected activities of the ERN. This partnership is not formalised by the European Commission and is managed directly by the ERN RARE-LIVER network.
Like Full Members and Affiliated Partners, a Collaborative Partner is a healthcare centre that contributes substantial expertise in rare liver diseases to the ERN.
Centres interested in establishing a Collaborative Partnership are invited to formally register their interest by downloading and completing the documents provided below.
External Experts and other partners
In addition to the three types of partnerships described above, External Experts may be appointed as individuals or as small groups to collaborate with the network.
They provide specialised knowledge and expertise in specific areas, supporting network activities, clinical guidance, and research initiatives without holding formal ERN membership.
Features of ERN affiliation
Full Member |
Affiliated Partner |
Collaborative Partner |
External Expert |
|
|---|---|---|---|---|
Application Process/Eligibility |
||||
Board of Member States endorsement required |
yes |
yes |
no |
no |
Submission of self-assessment and application form to EU required |
yes |
yes |
no |
no |
Is it always possible to apply? |
no |
no |
yes |
yes |
Required to meet ERN RARE-LIVER criteria |
yes1 |
yes2 |
yes3 |
yes |
Is a centre from a non EU member state eligible? |
no |
no |
yes |
yes |
Is a centre from a country that already has a Full Member in ERN RARE-LIVER eligible? |
yes |
no |
yes |
yes |
Membership Benefits |
||||
Member of Network Board with voting rights |
yes |
no |
no |
no |
Included on ERN RARE-LIVER mailing list |
yes |
yes |
yes |
yes |
Shown on ERN RARE-LIVER website |
yes |
yes |
yes |
no |
Access to funding/ resources linked to ERN |
yes |
yes |
no |
no |
Access to ERN RARE-LIVER training and education programmes |
yes |
yes |
yes, for free programmes or with publicly accessible ressources |
yes, for free programmes or with publicly accessible resources |
Can refer patients and contribute expert opinion to telemedicine platform CPMS |
yes |
yes |
yes, if located in the EU |
yes, if located in the EU |
Can become sub-committee or working group member/lead |
yes |
yes |
yes |
yes |
Commitment Required from Members |
||||
Recording of patient data in central registry R-LIVER |
yes |
yes |
yes |
not required but possible |
Providing information to help develop resources (e.g. training materials) |
yes |
yes |
yes (optional) |
yes (optional) |
Attendance at the Annual Meeting |
yes |
yes |
yes (optional) |
yes (optional) |
Regular Reporting of patient numbers and activities for the EU |
yes |
yes |
no |
no |
1 please see the Specific Criteria for Full Membership in ERN RARE-LIVER (PDF download)
2 please find details in the Definition and minimum recommended criteria for Affiliated Partners (PDF download)
3 please see the Collaborative Partnership Form (provided by the ERN office upon request).
Contribuitions of Members and Partners
