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 10:30 and ends at 18:00. Scroll down for the full programme.
Registration opens for SC/AB members
Steering Committee & Advisory Board Meeting
(for SC/AB members only)
Registration opens for all
Welcome coffee/tea
Opening and approval of the agenda
Alberto Pereira/Olaf Hiort Endo-ERN Coordinators
Welcome from hosts in Milan
Luca Persani, Istituto Auxologico Italiano, Milan
Update Endo-ERN new grant period 2024-2027
Albert Pereira, Endo-ERN Network Coordinator, adult chair
Roadmap to Copenhagen & Transition
Olaf Hiort Endo-ERN Coordinator, paediatric chair
EU Landscape: ERDERA Landmark Integration Project
Daria Julkowska, Scientific Coordinator of the European Joint Pogramme on Rare Diseases (EJP RD), and ERDERA, INSERM
EU Landscape: JARDIN Landmark Integration Project
Till Voigtlander, JARDIN Coordinator, Medical University of Vienna
Coffee/tea break
Dissemination & Communication (WP2)
Aimee Casey, Endo-ERN Communication Manager
Evaluation (WP3)
Emily White, Endo-ERN Project Manager & Operational Helpdesk Manager
CPMS & Healthcare (WP4)
Emily White, Endo-ERN Project Manager & Operational Helpdesk Manager
Move to the breakout room
Parallel educational interactive sessions
MTG1: Adrenal
MTG8: Thyroid
10 minutes update aims and core activities
25 minutes interactive session prioritising (activity) suggestions given by the chairs
Lunch
Parallel educational interactive sessions
MTG4: Genetic Endocrine Tumour Syndromes
MTG5: Growth & Genetic Obesity Syndromes
10 minutes update aims and core activities
25 minutes interactive session prioritising (activity) suggestions given by the chairs
Move to the plenary room
Education & Training (WP6)
Violeta Iotova, Chair WP6, UMHAT “Sveta Marina” (Varna), Bulgaria
European medicine shortages: How can we avoid a disaster for patients with rare conditions?
Johan de Graaf & Zuzana Smith, Endo-ERN ePAGs
Patient journeys
Matt Bolz-Johnson, Mental Health Lead and Healthcare Advisor, EURORDIS
Close of day – notices
Collaboration sessions
Working sessions for members.
Back to Day 2 programme