The EJP RD Training and Empowerment program aims to develop knowledge and build capacity of the rare disease (RD) research and care community through the delivery of training programs on a wide range of relevant topics thereby providing opportunities to a large panel of stakeholders, including:
The main objectives of the training activities on data management & quality are to decrease rare disease data fragmentation and increase data quality by raising the level of capacities and help data sharing in a FAIR ecosystem. The training activities cover a variety of topics including but not limited to variant interpretation, data management, registries, FAIRfication processes, Orphacodes, biobanking, and undiagnosed cases.
The overall objective of this training module is to improve rare disease research and innovation and to enhance the uptake of research results by building the capacity of the patient community and other key stakeholders. Moreover, dedicated educational activities will be aimed to train “expert” paediatric patients on rare diseases, paediatric medicines development and clinical research.

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