International Summer School on Rare Disease Registries and FAIRification of Data ONLINE!

28 September – 2 October 2020

Registration for this course is open, deadline is 19 July. The course will be online on 28 September – 2 October.

On the first three days module, the participants will learn (a) the resources needed for the establishment/maintenance of a high quality registry (b) the features of successful strategies to ensure (i) long-time sustainability of the registry, (ii) quality, (iii) legal and ethical issues in compliance with the EU General Data Protection Regulation.

During the second two days module, participants will deepen their knowledge on the single steps of the FAIRification of data and will discover the potential of FAIR registries. In this part a time slot will be allocated to discuss FAIR data management and FAIR project planning.

The training course is open to the  international research community, clinicians, medical specialists, registry curators, database managers, healthcare professionals and rare disease patients representatives.

To ensure active participation and exchange with teaching staff and participants, a maximum of 30 attendees will be admitted to each training module. 

The workshop and registration are free of charge.  



The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit