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Fig. 1 | Orphanet Journal of Rare Diseases

Fig. 1

From: Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries

Fig. 1

FAIRification steward team, EJP RD FAIR (principles, standards, and tools) experts, and European Reference Networks (ERNs) in a three-party interaction map. The FAIRification steward team works as liaisons between ERNs and EJP RD FAIR experts, collecting FAIRification challenges from ERNs, curating these challenges, providing them to experts, and returning consolidated knowledge from the experts to ERNs as proposed solutions. For single ERN requests, the team creates Expert-ERN communication channels (dashed line). The ERN team includes a project manager (or equivalent), a local data steward, and a developer (or software provider). The set of proposed solutions comprises workshops, where standards or tools are presented by experts; hackathons, where developers can try different tools themselves in a hands-on fashion; experience exchange between ERNs; and suggestions of existing implementations, tools, and resources

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172