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Meeting on FAIR Data ‘Visiting’ for Duchenne and other Rare Diseases

Meeting on FAIR Data ‘Visiting’ for Duchenne and 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. Registrations are now open. This meeting is of interest to representatives of patient organizations, clinicians, researchers, companies, academia, FAIR experts, funders, and health policymakers.

Title: Meeting on FAIR Data Visiting for Duchenne and other Rare Diseases
Date: November 22, 2022
Time: 13:00 – 17:00 Central European Time
Location: Online

Register here


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. 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.


Click here to access the agenda and speakers


We are looking forward to welcoming over 100 participants to attend this meeting that is taking place online.

Objectives of the 3rd International FAIR meeting on data ‘visiting’:

  • To understand the value of FAIR by Patient Organizations and patients themselves
  • To increase awareness amongst Patient Organizations on the FAIR solutions available to them
  • To be familiar with the latest infrastructure and ecosystem for data visiting in Europe
  • To show tangible examples of successful FAIR practices
  • To agree on next milestones on data visiting for Duchenne and other rare diseases

For inquiries about the meeting, please contact Nawel Lalout.

Nawel Lalout
Duchenne FAIR Project Manager
[email protected]