Searchable, findable rare disease registry data

Data repository


In the EU about 30 million citizens in Europe are affected by more than 6000 different rare diseases. The information about these patients is spread between hundreds of registries across Europe, at national, regional and local levels. The EU Rare Disease Platform aims to provide researchers, healthcare providers, patients and policy-makers with a consistent instrument to improve knowledge, diagnosis and treatment of rare diseases. It will make registries' data searchable at EU level and will standardise data collection and data exchange; which will increase the value of each registry and its registration.