Endo-ERN is focused on 8 main thematic groups (MTGs) which cover rare and/or complex endocrine conditions
Endo-ERN is a network of 100+ Reference Centres (RCs) in 27 EU member states+Norway that offers access to clinical experts for patients with rare endocrine conditions.
Endo-ERN is the network for rare endocrine conditions providing healthcare professionals with access to a variety of resources to support patient care.
If you work at a member institution this page will help with your Endo-ERN contributions.
Access to rare disease expertise without the need to travel is a core ERN objective. Our ePAGs contribute to all Endo-ERN activities.
Programme starts at 13:30 and ends at 19:00. Scroll down for the full programme. Event location: Bella Center Copenhagen (BCC), Center Boulevard 9 – Entrance 3. The meeting rooms are on the first floor Rooms 18/19.
Download the full programme. You can download the session presentations by clicking on the presentation title.
Registration open
Steering Committee & Advisory Board Meeting
(for SC/AB members only)
Welcome coffee/tea
Opening and approval of the agenda
Alberto Pereira/Olaf Hiort Endo-ERN Coordinators
Welcome from hosts in Copenhagen
Anders Juul (POC)
Alberto Pereira/Olaf Hiort
Working Group on Transition in Care
Andrea Isidori/Ulla Dohnert
Working Group on Genomic Testing
Thomas Eggermann/Dirk Prawitt
Update RD committees ESE and ESPE
Evangelia Charmandari/Elena Valassi
Coffee/tea break
Dissemination & Communication (WP2)
Aimee Casey, Endo-ERN Communication Manager
Evaluation (WP3) – including QoCRC
Emily White, Endo-ERN Project Manager & Operational Helpdesk Manager
Greta Ginski, Operational Helpdesk Manager
Registries, data managment and analysis (WP5)
Natasha Appelman-Dijkstra
Violeta Iotova
Break with drinks and snacks
Clinical Practice Guidelines & CDSTs (WP7)
Charlotte Gaasterland
Side-effects of new treatment options
Patricia Carl-Innig, BKMF e.V. (Federal Association for People of Short Stature and their Families), Bremen, Germany
Nordic Adrenal and Pituitary Patient Associations (NAPA), Lars Greiner
Voting session
Endo-ERN Mastermind
Closing remarks
Back to Day 2 programme