Tuesday, November 22, 7:00am - 11:00am (EST)
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For the first time, the World Duchenne Organization will team up with RaDiOrg Rare Diseases in Belgium and SMA Europe in Germany to form a wider network of approximately 160 Patient Organizations all interested in how the FAIR principles could make a difference in optimising the use of patients’ data.
Combined with the expertise of clinicians from ERN EURO-NMD, this small event consortium hopes to provide the broader Rare Diseases network, a better understanding of what is being implemented at the European level in regards to data ‘visiting’ across borders. The word ‘visiting’ will replace ‘sharing’ as with FAIR technologies data stay at source.
More information on the agenda and how to register follows soon.
World Duchenne Organization, firstname.lastname@example.org