3rd International FAIR data ‘visiting’ for Duchenne & Other Rare Diseases

The World Duchenne Organization is pleased to announce that the 3rd International FAIR data ‘visiting’ for Duchenne & Other Rare Diseases is taking place on 22nd November 2022.

We invite you to Save The Date. More information will follow shortly.

Event: 3rd International FAIR Data ‘Visiting’ for Duchenne & Other Rare Diseases
Date: Tuesday 22nd November 2022
Time: 13:00 to 17:00 Central European Time
Format: Online

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 optimizing 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.

→ Read on how patient organizations can drive FAIR data efforts to facilitate research and health care

→ Find out how a patient-led registry achieved a FAIR status by implementing an innovative FAIRification approach

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