Duchenne Data FoundationDuchenne Data Foundation

Bringing data to life for care and a cure

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Category Archives: Data

Duchenne Data Foundation   →  Data
Author By Katerina TzimaPosted on 20/12/202115/02/2022

Duchenne Data Platform, the first patient-led registry to achieve a FAIR status

Duchenne Parent Project in the Netherlands announced that their patient-led online registry (The Duchenne Data Platform) has succe...
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Author By Katerina TzimaPosted on 02/09/202115/02/2022

Patient Organizations and FAIR Data Efforts to facilitate Research and Health Care

Last March, the World Duchenne Organization in collaboration with the Duchenne Data Foundation organized the second Meet...
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Categories

  • Careers 2
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Recent Posts

  • The daily life of people living with Duchenne Muscular Dystrophy and their families21/04/2022
  • Duchenne Emergency Program activated for Ukrainian Duchenne and Becker MD families04/03/2022
  • Duchenne Map presents personalized clinical trial finder26/01/2022
  • New Board of Directors member18/01/2022
  • Duchenne Data Platform, the first patient-led registry to achieve a FAIR status20/12/2021

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Duchenne Data Foundation
We bring together fragmented data pieces of the Duchenne and Becker muscular dystrophy (DMD/BMD) world and test innovative solutions, scaling them to make a global impact

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