In order to ensure the correct progress of the planned tasks of EJP RD, ISS ensures that the international course “ International Summer School on Rare Disease Registries and FAIRification of Data ”, September 28 October 2,2020, ISS, Rome will be held ONLINE.
RELEVANCE, INTRODUCTION AND OBJECTIVES
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
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 (EndoERN), 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
For more information, click here.
Please register by 19 July 2020!