“6th International Summer School on Rare Disease and Orphan Drug Registries”

We are pleased to inform you that we are organizing the “6th International Summer School on Rare Disease and Orphan Drug Registries” (September 10-14, 2018, Istituto Superiore di Sanità, Rome, Italy).

Registries are key resources to help increasing timely and accurate diagnosis, improving patients management, tailoring treatments, facilitating clinical trials, supporting healthcare planning and speeding up research.
The International Summer school intend: i) to promote the establishment of Findable, Accessible, Interoperable, Reusable (FAIR) registries in compliance with IRDiRC and EU Recommendations and ii) to support cooperation among different registry stakeholders and coordination with registries that are developed within European Reference Networks and National Plans in the EU.
The 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 10-12, 2018) will provide participants with useful tools and methodologies to plan, establish and manage the registry activities.
The second part (September 13-14, 2018) will be a hands-on experience (Bring Your Own Data), where the attendees work with FAIR data experts to make their data FAIR and linked to other data that has been made FAIR before.

The School is open to health professionals, researchers, medical specialists, registry curators, database managers and representatives of patients associations involved in or intend to establish a rare disease registry, including inside European Reference Networks.



  • Detailed program.
  • Course slide presentations (pdf)


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