EuRR-Bone Registry

Did you know that there is a European registry on rare bone disorders being developed? It’s called EuRR-Bone and has received funding from the EU. OIFE has two patient representatives involved in the development of EuRR-Bone including the disease specific module on OI.

Summer School on Rare Disease Registries

To become more knowledgeable patient experts, we are represented at the International Summer School on Rare Disease Registries and FAIRification of Data this week.