Rare bone and mineral diseases are characterised by limited available evidence, small patient populations, and a need for specialised multidisciplinary care. European Reference Networks (ERNs) provide a framework to improve collaboration between expert centres and facilitate knowledge sharing. Within rare bone and mineral diseases, the European Reference Network on Rare Bone Diseases (ERN BOND) and the European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) aim to support coordinated care, data collection, and research activities across Europe.

To describe the role of ERN BOND and EuRR-Bone in the governance and management of rare bone and mineral diseases, highlighting how European collaboration, registry infrastructure, and expert networks can contribute to improving patient care and research.

The governance structure, activities, and collaborative processes of ERN BOND and EuRR-Bone were reviewed. The organisation of the network, involvement of healthcare professionals and patient representatives, registry development, data collection strategies, and mechanisms supporting clinical collaboration and research were described.

ERN BOND and EuRR-Bone have established a coordinated European framework for improving the management of rare bone and mineral diseases. The collaboration enables structured data collection through registry tools, supports the development of condition-specific modules, facilitates communication between expert centres, and promotes the generation of evidence in rare diseases where traditional research approaches are challenging. The governance model integrates healthcare professionals, researchers, and patient representatives to support sustainable network development.

The integration of ERN BOND and EuRR-Bone provides an important foundation for improving the organisation of care, research collaboration, and knowledge generation in rare bone and mineral diseases. European governance structures combined with high-quality registries are essential to address unmet needs and improve outcomes for patients with rare conditions.

Rare bone and mineral diseases require international collaboration due to limited patient numbers and fragmented expertise. ERN BOND and EuRR-Bone demonstrate how European networks and registry infrastructures can support coordinated care, improve understanding of rare conditions, and create opportunities for future research and innovation.