EuRREB 2025 Symposium – presentations
- Luca Sangiorgi – Registries and ERNs
- Ana Priego Zurita – 5 years of European Registries of Rare Endocrine and Bone Conditions
- Martine Cohen Solal – The Melorheostosis module: a collaboration between ECTS, ERN BOND and EuRREB
- Polyzois Makras – The LCH module: a collaboration between ERN BOND, ERN-EuroBloodNet and Endo-ERN
- Sophie Huisman – Outcomes of the FD/MAS module
- Alexandra Ertl – The Rare Hypophosphatemia module
- Chady Omara – Contributing to the Achondroplasia module: a student experience
- Tenna Toft – The importance of a pregnancy module
- Marina Mordenti – Remodeling an existing rare disease registry to be used in regulatory context
- Tess de Rooij – Ethics approval and data sharing process
- Bruna Dos Santos Vieira – FAIR Data Stewardship
- Faisal Ahmed – Rare Disease Registries – seeing the forest for the trees