Need help getting up and running with our registries?

Drop-in Sessions

Are you interested in putting data of your patients with rare endocrine and bone/mineral conditions into our registries, but need help to get started?

We can show you how to enter the data and answer any questions you might have related to our registries.

Drop-in for one of our online ZOOM sessions, available twice a month. We are here to assist you!

For all sessions, you can log in via the button on our homepage or through the

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Would you like to join one of our Study Groups?


Study Groups are composed of experts from different disciplines including patient representatives. Each group brings together their expertise to accomplish its objectives. These might include developing research projects within the registries such as developing condition specific modules.

At the moment we are in need of a pediatric surgeon in our Achondroplasia Study Group, a member (preferably a geneticist) in our Osteogenesis Imperfecta Study Group and a ERN-BOND member in [...]

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Successful first joint EuRRECa / EuRR-Bone symposium!


On Monday April 3rd 2023, the first joint EuRRECa/EuRR-Bone symposium took place in Leiden, the Netherlands. With participants representing 11 countries we celebrated five years of the registries, took a look at our future plans, and exchanged knowledge.

We got to listen to different perspectives on the registries; from the ERNs, clinicians, researchers and patients. Registries activities have been discussed, such as our Condition Specific Modules, and we closed off the symposium with a nice lunch and poster exhibition.

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Congratulations Faisal!


Congratulations to EuRRECa project leader Professor Faisal Ahmed from University of Glasgow for his appointment at the University of Leiden as Professor of Endocrine Registries. His inspiring Inaugural Lecture was held Monday 3 April.

The topic Strength in Numbers explained the importance of having high quality, patient-centred registries for rare diseases.
In addition to supporting several forms of clinical research, disease registries can deliver on improvements in the quality of clinical care.

Future challenges [...]

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