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Category Archives: News

Duchenne Data Foundation   →  News
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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Duchenne Patient Academy 2021
Author By Suzie-Ann BakkerPosted on 18/10/202119/11/2021

Duchenne Patient Academy 2021

The Duchenne Data Foundation, in collaboration with the World Duchenne Organization, is launching the 4th edition of the Duchenne...
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Author By Katerina TzimaPosted on 06/10/202115/02/2022

First research paper – BIND Project

BIND researchers provide a model for studying learning and behaviour challenges in Duchenne MD The presence and severity of lea...
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Author By Katerina TzimaPosted on 05/10/202115/02/2022

Report – 7th Duchenne CAB meeting

The Duchenne CAB held its 7th meeting between April and July 2021. Due to the COVID- 19 pandemic, the meetings were again held vir...
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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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Author By Katerina TzimaPosted on 01/09/202115/02/2022

World Duchenne Awareness Day 2021

Every year, on the 7th of September during the World Duchenne Awareness Day, a different thematic is chosen to raise awareness for...
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Author By Katerina TzimaPosted on 12/07/202114/07/2021

Job Position: Software Engineer

About DDF Duchenne Data Foundation is a worldwide collaboration to enhance the understanding of the course of Duchenne Muscular...
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Author By Katerina TzimaPosted on 10/06/202115/02/2022

New Board of Directors member

The Duchenne Data Foundation welcomes Dr. BS Ajai Kumar as Board Member Dr. Ajai Kumar is a doctorpreneur and the Executive Cha...
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Author By Katerina TzimaPosted on 08/06/202115/02/2022

New Board of Directors member

The Duchenne Data Foundation welcomes Klair Bayley as Board Member. The Duchenne Data Foundation is expanding its Board of Dire...
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Author By Katerina TzimaPosted on 03/06/202115/02/2022

New Board of Directors member

The Duchenne Data Foundation welcomes Rob Schreur as Board Member The Duchenne Data Foundation is expanding its Board of Direct...
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Categories

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Recent Posts

  • Applications now open for Duchenne Patient Academy 202404/11/2024
  • Be Part of a Major Milestone in Rare Disease Research: Join ERDERA’s Launch Event!18/10/2024
  • BIND Project secures funding to continue genotype phenotype correlation of DMD/BMD brain18/09/2024
  • Launch of the ERDERA partnership16/09/2024
  • iMM Joins the MAGIC Consortium to Advance Research on Muscular Dystrophies07/06/2024

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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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