Duchenne Data FoundationDuchenne Data Foundation

Bringing data to life for care and a cure

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Category Archives: News

Duchenne Data Foundation   →  News
Author By Katerina TzimaPosted on 25/05/202209/06/2022

Duchenne Siblings Webinar

The Duchenne Data Foundation is organizing a webinar on Duchenne Siblings. This webinar is part of the Duchenne and Becker Digital...
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Author By Katerina TzimaPosted on 21/04/202221/04/2022

The daily life of people living with Duchenne Muscular Dystrophy and their families

While assuring medical assistance for people living with Duchenne Muscular Dystrophy (DMD) is extremely important, all aspects of...
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Author By Katerina TzimaPosted on 04/03/202214/04/2022

Duchenne Emergency Program activated for Ukrainian Duchenne and Becker MD families

The Duchenne Data Foundation and the World Duchenne Organization are staying close to the families affected by Duchenne and Becker...
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Author By Katerina TzimaPosted on 26/01/202215/02/2022

Duchenne Map presents personalized clinical trial finder

Duchenne Map is an online platform built to centralize important information and connect the different stakeholders of the DM...
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Author By Katerina TzimaPosted on 18/01/202215/02/2022

New Board of Directors member

The Duchenne Data Foundation welcomes Arjen Bergsma as Board Member Arjen Bergsma is currently working as programme officer of...
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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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Categories

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  • Data 3
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  • Duchenne CAB 5
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  • Duchenne Patient Academy 6
  • EU Projects 2
  • News 27
  • Social Duchenne 2

Recent Posts

  • Duchenne Data Repository, connecting and collecting  global dystrophinopathy data22/06/2022
  • The challenges that Duchenne Siblings face14/06/2022
  • Duchenne Siblings Webinar25/05/2022
  • 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

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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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