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
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 [...]
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.
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 [...]
This has been in the works for weeks and the launch date is finally here!
We are so excited to announce our new website: eurreb.eu
There could not be a more perfect time to launch it than on 3 April 2023 during our first EuRRECa / EuRR-Bone joint symposium.
With new features tailored to our patients, clinicians and researchers, teasers of upcoming events, news and so [...]
We would like to thank everyone online and in person for their contribution to a successful final meeting on Monday 13 February! We had fruitful discussions and it was nice looking back at all the work we have done of the past three years.