ERDERA Virtual Platform
Empowering Rare Disease Research
Researchers and other stakeholders benefit from easy discovery, selection, access, and use of data for Rare Disease (RD) research purposes.
The Rare Diseases (RD) Virtual Platform (VP) network facilitates this. It is an ecosystem of data resources and services related to rare diseases. Originally developed under the EJP RD initiative, the VP ecosystem integrates a broad range of resources and data sources. This includes patient registries, biobanks, genomic-phenomic and multi-omics repositories, resource catalogues, knowledge bases, and research tools.
Resources within the VP ecosystem are designed to implement FAIR (Findable, Accessible, Interoperable, and Reusable) principles, ensuring that data remains standardized, shareable, and accessible—while always under the control of its holder.
Ecosystem
Patient Representatives
Understand treatment options, real-life experiences, and diagnosis timelines. Access statistics on time to diagnosis across countries for specific diseases
Clinicians
Support patients with evidence-based insights. Collaborate with researchers to explore data relevant to patient care and treatment decisions.
Researchers
Discover and analyze data resources. Use the VP to find datasets and samples related to specific diseases.
Data Scientists
Automate data analysis and develop algorithms. Use APIs and ontologies to perform advanced analytics and machine learning on rare disease data.
Resource Discovery Features
The Virtual Platform also offers a number of relevant resources for computational scientists, developers, solutions providers and data stewards.
Visual Map
Explore connected resources via an interactive interface that visually represents relationships between datasets, samples, and research projects.
Search Box
Find resources using keywords (e.g., “dystrophin”) to quickly locate relevant data across the entire platform ecosystem.
Resource List
Browse and select from a comprehensive catalog of onboarded resources, filterable by disease, data type, and availability.
Discovery API
Explore connected resources via API that provides metadata about the resources available for the VP.
Ontologies
The VP has a set of ontologies that are used to annotate data, metadata, metadata schemas and data services.
Metadata Schemas
Resources such as datasets, patient registries, guidelines and biobanks are made available to the Virtual Platform through metadata that follow the provided metadata schemas.
Technical documentation
We provide technical documentation to help stakeholders to provide or consume VP resources.
Tools
Interested parties can reuse tools that are offered to help provide and consume VP resources.