5th International Summer School on Rare Disease and Orphan Drug Registries & Bring-Your-Own-Data workshop

The Summer School will consist of plenary presentations and interactive small-group exercises, according to the Problem-Based Learning methodology. The first part of the School (September, 18-20) will provide participants with useful tools and methodologies for establish a registry, the quality of the data collected and how a registry is turned into a FAIR resource. The second part (September 21-22) will be a hands-on experience (bring your own data), where the attendees work with FAIR data experts to make their data FAIR and linkable to other data that has been made FAIR before.

Linked data and ontology task force

Bring Your Own Data: WikiPathways, nanopubs, and the Rett Syndrome

To study the Rett Syndrome, Maastricht University combines experimental research and bioinformatics. In this research, nanopublications have a lot to offer to WikiPathways, which contains many statements backed by literature. The goal of this BYOD is to expose these statements as FAIR nanopublications with source, so that they can be linked to other data sets.

Summer School and Workshop on Rare Diseases at the Istituto Superiore di Sanità

This autumn, the National Centre for Rare Diseases (CNMR) of the Istituto Superiore di Sanità, Rome, Italy is organising two training events on rare disease registries: The 4th International Summer