We were two people (Alessandra and Ingunn) who represented OIFE at the 2nd Registries Symposium of the two registries EuRR-Bone (rare bone conditions) and EuRRECa (endocrine conditions) on April 22nd 2024.

The Symposium in Milan was attended by 90 people (60 in person and 30 online) from 22 different countries and made the event a resounding success!

We got to listen to different perspectives from clinicians, researchers and patient representatives. There was a special guest from the French National Rare Disease Registry (Arnaud Sandrin from BNDMR, France) and the symposium was closed with a roundtable discussion.

Please check out our dissemination page with the presentations, video and photo gallery to revisit the sessions.

The representatives from OIFE learned a lot about challenges and opportunities of data collection and different ongoing research initiatives.

Do you want to learn more about the registries? Then we recommend this article:

Data collection on rare bone and mineral conditions in Europe: The landscape of registries and databases

After the symposium Ingunn was one of two patient representatives who joined the steering committee meeting, which was followed by a very nice reception. Excellent opportunities to meet and network with new and old friends in the rare bone space.