ERDERA contributed to the first Journée nationale FrBioNet, bringing a European rare disease perspective to discussions with the French biobanking community.

ERDERA connects rare disease research and biobanking at FrBioNet’s first national event

Journée nationale FrBioNet

On 24 September 2026, Dr Başak Uysal, Data Service Hub Project Manager at the ERDERA Coordination Office, presented ERDERA at the first Journée nationale FrBioNet, held at Hôpital Bicêtre AP-HP near Paris.

In a pre-recorded presentation entitled“ERDERA: Connecting Rare Disease Research, Data and Biobanking Across Europe”, Dr Uysal introduced ERDERA’s work to connect research funding, clinical studies, data infrastructures and patient-centred innovation across Europe.

The presentation highlighted the importance of harmonisation, FAIR data practices and interoperability. It also explored connections between rare disease research and biobanking, including the role of high-quality metadata, data standardisation and links between biological samples and clinical and genomic data.

ERDERA’s participation provided an opportunity to engage with the French biobanking community and consider how cooperation between national and European infrastructures can support research on rare diseases.

Find out more about the Journée nationale FrBioNet.

 

Photo by FrBioNet Linkedin.

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