The e-REC is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of rare bone conditions incl. OI. The platform is open to ALL centers who see people with OI and other rare bone conditions.

WHAT IS EURR-BONE?

The EuRR-Bone (European Registry for Rare Bone and Mineral Conditions) project is funded by the European Union’s Health Programme. EuRR-Bone’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions in collaboration with the EuRRECa project (European Registries for Rare Endocrine Conditions).

WHAT WILL EURR-BONE COVER?

EuRR-Bone will cover rare bone and mineral conditions the European Reference Network on Rare Endocrine Conditions (Endo-ERN) as well as the European Reference Network on Rare Bone Disorders (ERN BOND). EuRR-Bone will be of service to all patients, health care professionals and researchers involved in the care of people with rare bone and mineral conditions.

WHO CAN PROVIDE DATA?

Many people think that only centers connected to ERN BOND can provide data to the new EuRR-Bone registry. This is NOT correct. The e-REC is an electronic reporting system which captures activity and allows for a better understanding of the occurrence of rare bone conditions incl. OI. The platform is open to ALL centers who see people with OI and other rare bone conditions.

MODULE ON COVID-19 AND RARE BONE CONDITIONS

There is even a module gathering data on people with rare bone conditions and Covid-19!

DROP IN SESSIONS EVERY OTHER WEEK

Every other week the project has a drop in session, where clinicians/centers who are interested can have a demo and more information. More information through this link.