European Platform on Rare Disease Registration

The European Platform on Rare Disease Registration (EU RD Platform) is an integrated platform connecting patient registries for rare diseases (RD) across Europe. It was developed by the Commission's Joint Research Centre in collaboration with the Directorate General for Health and Food Safety. The Platform is supported by the European Rare Disease Registry Infrastructure (ERDRI), which provides the infrastructure and tools to make RD registries' data searchable, findable and re-usable. The Platform also sets EU-level standards for RD data collection and facilitates data sharing between registries across institutions and/or countries for the purpose of supporting the work of the European Reference Networks and for conducting meaningful studies.