Types of affiliation
There are four possible types of affiliation with the ERN RARE-LIVER for health care 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 officially acknowledged by the European Commission department responsible for EU policy on food safety and health (DG Santé). See below for an overview of the features for the different kinds of affiliation.
For information on patient representation and involvement click here.
Full Membership:
The call for applications for Full Membership 2019 is closed. The decision of whether or not to open a new call will be taken by the European Commission in due course. Until then, application for Full Membership is not possible.
The application for Full Membership comprises 2 steps:- Support of your national health ministry. The “Board of Member States” is the oversight body for the EU and has representatives from all the health ministries for member states; your national board member should be your first contact: https://ec.europa.eu/health/sites/health/files/ern/docs/ern_board_members_en.pdf
- Completion of an assessment process which includes a form, a self-assessment and supporting data and (potentially) a site audit. For up to date information see the Commission’s ERN webpages: https://ec.europa.eu/health/ern/policy_en.
Affiliated Partnership
The call for applications for Affiliated Partnership 2019 is closed. The decision of whether or not to open a new call will be taken by the European Commission in due course. Until then, application for Affiliated Partnership is not possible.
In order for ERNs to deliver genuine added value to all European Union Member States, Member States which do not have representation from a member within an ERN can participate through healthcare providers that are designated as “Associated National Centres” or “Coordination Hubs”.
If your Member State that does not currently have a Full Member and you are interested in Affiliated Partnership you need to contact your BoMS representative in the first instance. If your country has a Full Member then your options are either Full Membership (see above) or Collaborative Partnership (see below).
Collaborative Partnership
This is a looser form of partnership which does not bring ERN Centre Status but allows partners to develop links with some of the activities of the ERN. This partnership is not formalized with the European Commission and is managed by the ERN RARE-LIVER itself. Similar to Full Members and Affiliated Partners, a Collaboartive Partner is a centre that provides healthcare and adds significant expertise for rare liver diseases to the ERN. If you are interested in Collaborative Partnership please contact the ERN office and request the Collaborative Partnership Form to register your interest formally.
External Experts and other partners
Other than the three kinds of partnerhip mentioned above, External Experts are single persons that collaborate with the network.
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 ressources |
|
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).
Tasks for members/partners of the ERN RARE-LIVER
