EuRREB Symposium 2025 - 12 September 2025 (Leiden, the Netherlands)

Welcome to Leiden! We are very proud to be the host city of the EuRREB Symposium, that you are attending. Leiden is a city where knowledge and culture are engrained in its DNA. Situated at a historically important junction, where waterways and roads cross, lies a city that will enchant you: the city of Leiden, famous for its university, museums, waterways, and alms-houses. The spirit of the Golden Age lives on in this medieval city where Rembrandt was born, and which has inspired countless amounts of other influential painters. Ever since, Leiden continued to attract those that were on a quest for knowledge and freedom of expression, from the Pilgrims to Albert Einstein, the historic canals, the beautiful buildings, and alleyways have surrounded those who have made important discoveries for centuries. We hope you enjoy your time here in Leiden.

Programme

  • 10:00 - 10:05 Opening
  • 10:05 - 10:25 Registries and ERN's
  • 10:25 - 10:45 5 years of European Registries of Rare Endocrine and Bone Conditions
  • 10:45 - 10:55 Melorheostosis module: a collaboration between ECTS, ERN BOND and EuRREB
  • 10:55 - 11:05 LCH module: a collaboration between ERN BOND, ERN-EuroBloodNet and Endo-ERN
  • 11:05 - 11:15 Outcomes of the FD/MAS module
  • 11:15 - 11:25 XLH module
  • 11:25 - 11:35 Achondroplasia module: student experience
  • 11:35 - 11:45 The importance of a pregnancy module
  • 11:45 - 12:05 Discussion: How to proceed with the first modules?
  • 12:05 - 12:25 Coffee break
  • 12:25 - 12:45 How to develop KPIs for a registry
  • 12:45 - 13:05 Remodeling an existing rare disease registry to be used in regulatory context
  • 13:05 - 13:20 Ethics approval and data sharing process
  • 13:20 - 13:40 FAIR Data Stewardship
  • 13:40 - 14:00 Rare Disease Registries – seeing the forest for the trees
  • 14:00 - 15:00 Lunch

Free online City Guide & Map

The Leiden City Guide is packed with great tips for restaurants, activities, museum and much more! 

Click here for your online Leiden City Guide

The useful Leiden City Map highlights the most important points of interest in Leiden!

Click here for your online Leiden City Map

Leiden Booking Service

Leiden Booking Service is here to ensure the hotel accommodation booking process for your conference runs smoothly and efficiently. With Leiden Booking Service, conference participants can easily book hotel rooms before, during, and after the event. This service has been specifically developed for multi-day, international conferences and offers transparency, ease of use, and guaranteed, reliable rates for everyone involved.

Book here

Discover Leiden

Discover the best shops

From vintage boutiques to well-known fashion stores, Leiden is home to the most surprising shops. Treat yourself to a new outfit or shop the best Leiden gifts in the historic city centre.

Click here to discover the best stores in Leiden