Endo-ERN General Assembly (GA) Day 1
Tuesday, 23 April, 2024

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) 

Find out more information about the SC/AB meeting

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.  

Information video for patients and healthcare professionals

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