Frequently Asked Questions

Endo-ERN started on March 1, 2017 and is an ongoing project, with several connecting EU grants. The current grant is from the EU4Health programme 2021-2027.

To change the primary and/or substitute representative a completed form signed by the hospital CEO should be emailed to the Endo-ERN project office. You can find the form and more information about updating contacts here.

The procedure to become a patient representative can be found here.

Find out more about the disease expansion here.

You should contact your treating physician, who can contact the most relevant Endo-ERN Reference Center to request for a virtual consultation via the Clinical Patient Management System (CPMS).

More information about this procedure can be found here.

There are no specific criteria of affiliation to an ERN. It is a competence of Member States to designate their potential affiliated partners.

According to the Board of Member States: ERN applicants will be encouraged to liaise with National authorities, where appropriate, to identify a list of potential affiliated partners, for collaboration with the network from the outset. How-ever, for all potential affiliated partners (those identified before the ERN approval or those that will come up after the ERN approval) the affiliation process will take place only after the approval of the ERN by the Board and following the formal designation of each of the affiliated partners by its national authorities.

Find the complete text here.

Click here for more information from the European Commission.

Affiliated Partners are not members of the Networks. They are expected to establish a link to the Networks for those countries which do not have a member in a specific ERN thus addressing the concerns related to the geographic coverage of the Networks.

The Affiliated Partners will contribute to the Networks’ activities and benefit from their expertise, facilitating the sharing of knowledge across the EU. Most importantly, Affiliated Partners should act as entry points to ERNs for patients, improving the accessibility for patients across the EU. For that reason, the Affiliated Partners shall participate in the CPMS virtual consultation panels for those patients that they have referred to the Networks and may also attend some other virtual panels for their own learning purposes or to fill any knowledge gap, due to their specific expertise (e.g. in case of laboratories).

In some cases, Affiliated Partners may at a later stage, if they are healthcare providers and develop the required expertise, become ERN members. This would only happen in compliance with the procedures for membership applicable to any healthcare provider and NOT automatically or with a special procedure.

All HCPs within our ERN must complete the annual continuous monitoring exercise from 2023 onward. This includes both full member and affiliated partners.

Please note moreover that an Affiliated Partner will lose its partnership if a healthcare provider from the same Member State joins the Network as a member.

The online submission tool is open from the 19^th of December 2022 until 19^th February 2023.

This is a hard deadline. Submissions will not be accepted after this date.

You will find information about the timeline here.

Similar to the ERN initial membership assessment, the form can be updated and saved, then returned to at a later date in the online submission tool (see here).

The initial assessment will be consulted by the IEB during the technical evaluation (Phase 3).

No, Endo-ERN does not have any clinical indicators this time. You therefore have no data to enter into Section A.11 of the Self-Evaluation form.

It is preferable that each HCP supplies their own recorded information from the continuous monitoring submission however we can provide these submissions from the previous years if there is a demand for this in January 2023.

As each institution varies in size and multidisciplinary team make-up, we recommend including at minimum these personnel though please note others may need to be consulted (particularly for phase 3):

• Head of Expert Reference Centre
• Person responsible for annual Continuous Monitoring Submission
• The respective named Endo-ERN HCP representatives
• A member of your rare disease office (if applicable)