International Summer School on RD Registries and FAIRification of Data, ed. 2020

Webinar Series

September 28 – October 2, 2020

Organized by:


The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP-RD). EJP-RD is a European Commission funded project (grant agreement No 825575, 2019 – 2023) with the goal “to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation”. For more information about the EJP-RD, see

In particular this Course is a part of the WP14 on “Data Management & Quality Training”, which aims to organize residential training courses in different Countries. WP and Task Leader: Dr. Claudio Carta, ISS. Course Director: Dr. Domenica Taruscio, ISS.

The Course is made up of 5 days of training organized by Istituto Superiore di Sanità (ISS) in close collaboration with, mainly, EJP-RD task partners [LUMC & UoG (Endo-ERN), IOR (Bond-ERN), UUH (Metab-ERN), EURORDIS, ISCIII, LUMC, INSERM (RaDiCo), UMCG, DTL-Projects (EIXIR-NL), CNR (ELIXIR -IT), AMC]


ISS, has gained vast experience by organizing numerous courses focused on rare disease registries with the support of key partners. In particular since 2013 ISS has organized and hosted the “International Summer School on Rare Disease and Orphan Drug Registries” and since 2014 the “Bring Your Own Data To Link Rare Disease Registries”.

Due to the force majeure situation, COVID19, the international course will be held ONLINE 

Registration is possible for:

- the entire course (“Rare Disease Registries and FAIRification of Data”, September 28-October 2, 2020).

- the first training module (“Rare Disease Registries”, September 28-30, 2020)

∙ the second training module (“FAIRification of Data”, October 1-2, 2020)  



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