Endo-ERN co-coordinators Alberto Pereira and Olaf Hiort welcomed 143 representatives from 93 reference centres, as well as 13 ePAGs in Copenhagen for the Endo-ERN General Assembly (GA). Taking place Friday, 9 May and Saturday, 10 May just before the start of the Joint Congress of ESPE and ESE. This is a short summary of the work package presentations and if you click on the presentation title you can download the full presentation. The MTG slides are available as well – click on the session title. If you have any questions please contact the Endo-ERN Project Office.
Update Endo-ERN Grant, Alberto Pereira/Olaf Hiort
An update on the grant status and future horizon. JARDIN, European Health Data Space (EHDS) and ERDERA are key vehicles for optimising ERNs and improving #raredisease outcomes.
Endo-ERN has initiated the Quality of Care Improvement Through Research Council linked to work package1 with a view to establishing a third transversal working group on research. General Assembly 2026 local organizing committee led by Prof Evangelia Charmandari with the date for 2026 to be set.
Working Group on Transition of Care, Andrea Isidori/Ulla Dohnert
Established at the last Endo-ERN GA 2024 in Milan has 20 members representing all MTGs and an ePAG. Survey conducted earlier this year and will be analysed and prepared for publication. This WG is closely aligned with ESPE/ESE.
Working Group on Genomic Testing, Thomas Eggermann/Dirk Prawitt
Currently 22 participants from 8 different countries and meet bi-monthly. Currently gathering information about available testing in different HCP/reference centres. A publication is also being planned and authors, particularly pathologist, are being sought. Contact the project office to enquire.
Update RD committees ESE and ESPE, Evangelia Charmandari/Elena Valassi
Several ongoing projects between the societies including transition project as noted above. Research ongoing for two projects that provide patient support in Adrenal Insufficiency. Educational programme in development for Rare calcium, phosphate and Bone disorders (Rare-CAPAB). ESE Talks…webinar topics confirmed.
Communication & Dissemination (WP2), Aimee Casey
Update on future website developments and social media progress. Outreach to national associations planned, if you have close connections please contact the project office.
Evaluation (WP3) – including QOCRC, Emily White
Feedback from 2024 Continuous Monitoring process shared, including alignment of e-REC with EC Platform reporting. Performance system update with 2024 reports circulated by June 1 for feedback. ePAGs are participating as well. Info for 5-year evaluation redrafted.
CPMS & Healthcare (WP4), Greta Ginski
CPMS 2.0 update and overview of 2024 activity by country and MTG. Resources to support use of CPMS 2.0 available in this presentation.
Registries, data management and analysis (WP5), Natasha Appelman-Dijkstra
Overview of the e-REC and Core registries provided by condition, country and MTG. Information about new features added to the dashboard and an incentive programme and associated KPIs is available in the slides.
Education & Training (WP6), Violeta Iotova and Kamelia Markovska
Update on Endorsement process and acknowledge of significant increase in Endorsed Event in 2025. There will be 6 exchanges in 2025 and the call for 2026 will open in Q4. Overview of planned webinars and symposium at the Joint Congress of ESPE and ESE.
Clinical Practice Guidelines & CDSTs (WP7), Charlotte Gaasterland
A status update on development of guideline methodology and confirmation of new guideline project Congenital hypopituitarism. Survey will be circulated for the 2nd and 3rd topic after GA. Preliminary survey results regarding endorsement shared.
This presentation focuses on the changing landscape due to the impact of existing and new pharmaceutical intervention and inconsistent care for patients managing a long-term condition.
Nordic Adrenal and Pituitary Patient Associations (NAPA), Lars Greiner
Background on the establishment of the NAPA organisation and the benefits of smaller organisations coming together to work together on similar objectives.
