The EU RD Platform copes with the fragmentation of rare disease patients data contained in hundreds of registries across Europe. Read more
Searchable, findable rare disease registry data
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List item: ERDRI
European Rare Disease Registry Infrastructure
(ERDRI) -
List item: EU Standards
European standards
for data collection
and data sharing -
List item: Trainings & Events
Trainings,
Resources
and Latest news
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.