Updates from projects

conect4children: advancing paediatric data standardisation

conect4children: advancing paediatric data standardisation

The article “Learning from conect4children: A Collaborative Approach towards Standardisation of Disease-Specific Paediatric Research Data” has been published in the journal MDPI on April 8, 2024. This work originated as part of the conect4children project, in which...

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Training on strategies for undiagnosed rare disease cases

Training on strategies for undiagnosed rare disease cases

A 3-day training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners. The training will be held in Rome, Italy on 13-15 Ma…

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HELIOS launched to address haemoglobinopathies in Europe

HELIOS launched to address haemoglobinopathies in Europe

The Foundation announces the launch of a new four-year project, starting today, funded by the Cost programme, entitled HELIOS. The project aims to build a network of excellence to integrate, harmonise and disseminate existing knowledge on haemoglobinopathies,...

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