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Welcome the Endo-ERN Digest #1. You are receiving this newsletter as you are the primary or substitute representive for your HCP.

The aim of the Endo-ERN Digest is to keep you informed of Endo-ERN activities related specifically to your membership. Perhaps you have been asked to complete a survey earlier in the month and didn’t have a chance yet – consider this your reminder. Don’t know how to cite Endo-ERN in a planned publication – we have a document for that. Looking for funding for research? We will include the calls from ERDERA that you as an Endo-ERN HCP are eligible to apply.

The Endo-ERN Digest will land in your inbox on the first Friday of every month.

Endo-ERN team

APPLY: ERDERA Networking Support Scheme (NSS) funding call

The European Rare Diseases Research Alliance (ERDERA) has a call for the Networking Support Scheme (NSS). The deadline for this round of funding is open until early October. The aim of the NSS is to bring rare disease and the rare cancer community together across borders, disciplines and sectors.

This call will be open until April 2029 with applications being reviewed on a six-monthly basis.

APPLY

HOST: Exchange Programme

The Endo-ERN Exchange Programme will open for applications 1 October – 30 November 2025 for exchanges in 2026.

Several members made themselves available for the 2025 exchange and you can see them here. If you would like to update your listing or add your HCP to the listing please contact the project office with the following information:

Name of your HCP
MTGs
Timing
Specialties/Topics

In the meantime you can check out the criteria for the exchange programme and possibly identify a suitable applicant from your team.

Of course all members can host an exchange and many of the exchanges are made possible through personal connections within the network. It is helpful for the members to see what HCPs are well prepared to take an exchange participant.

LEAD: Call for 2 chairs (paediatric & adult) Research WG

Now ERNs are evolving and maturing, the European Commisssion encourage ERNs to also create research initiatives. Therefore, as presented at the General Assembly in Copenhagen, a third transversal Working Group will be installed: the Endo-ERN Research Working Group (similar to those of Genomics and Transition of Care).

We therefore launch this call to recruit for 2 chairs (paediatric & adult) to set-up and lead this Research WG. It is envisioned that the WG will act as a coordination and information point on EU research possibilities and allows for creation of consortia that may lead future EU projects. The chairs should furthermore act as liaison officers to the ERDERA consortium.

We are looking for:

Senior established research leaders
Experience in leading (European) research grants, e.g. ERC, Horizon
Possible candidates from under-represented countries: Bulgaria, Cyprus, Czechia, Estonia, Greece, Hungary, Ireland, Latvia, Lithuania, Poland, Portugal, Romania, Slovakia, Slovenia.

If you have interest, please send a short motivation and CV to the Endo-ERN project office.

We would like to have your application by Monday, 15 September.

NB Perhaps you are interested in joining the group but not as chair. Please get in touch with the Endo-ERN project office to express your interest.

START: EU Login for CPMS 2.0

CPMS 2.0 now uses EU Login for access, replacing the old SAAS accounts. This makes signing in faster, more secure, and easier to manage. Need help setting up? Watch our short step-by-step video guide.

CPMS 2.0 App now available for download in the Android and Apple stores. This will increase the convenience of CPMS 2.0 use and the app is enhanced with several new features.

ENGAGED: MTG representation

The Main Thematic Groups (MTGs) are active throughout the year, not just with CPMS, but with online meetings to discuss topics such as guidelines, planning webinars, potential surveys, planned publications, to name just a few.

Your contribution or that of your team is highly valued. You can find the planned meetings for the MTGs and previous minutes on the Endo-ERN website.