FAIR Data Archives • World Duchenne

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World Duchenne Organization to Collaborate with Health-RI To Optimize their Respective FAIR Training Efforts

The recent 3-day online FAIR Training course will be embedded in the FAIR training portfolio Health-RI is currently developing.

Five FAIR Neuromuscular Rare Disease Registries Now Provide Joint Answers to Questions from Researchers or Patients

We successfully showed how five rare disease registries for neuromuscular disorders can now be jointly queried because they are interoperable

The 3rd International Meeting on FAIR Data Visiting for Duchenne, Becker & Other Rare Diseases

The recording and slides of the 3rd International Meeting on FAIR Data Visiting for Duchenne, Becker & Other Rare Diseases are now available.

Register for the FAIR training for March 2023

Register for the FAIR training March 2023

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…

FAIR Data Sharing Without Oversharing

Duchenne Parent Project NL and EURO-NMD can now begin leveraging their FAIR data to benefit People Living With Rare Diseases.

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

How will FAIR optimize the use of patient data? The 3rd International FAIR data 'visiting' for Duchenne & Other Rare Diseases is November 22.

Innovative and Sustainable FAIR solution for Duchenne Data Platform

The Duchenne Data Platform has successfully deployed an innovative and sustainable FAIR solution, achieving a FAIR status.

How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care

During the second FAIR Data Meeting for Duchenne, 120 participants from 22 countries discussed how they could drive FAIR data efforts to facilitate research and healthcare.

Meeting on Data Sharing for Duchenne

Step by Step towards Duchenne FAIR data In 2019, we made a commitment towards making Duchenne data suitable for sharing…

Patient centered and interoperable registry hub for Rare Neuromuscular Diseases

EURO-NMD, the European Reference Network for Rare Neuromuscular Diseases, spans 14 European countries, with 61 reference centres that oversee more…

Highlights on Data sharing for Duchenne meeting

21-22 March 2019, Level Eleven – Amsterdam, the Netherlands Data is one of the few technologies that becomes of greater…

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World Duchenne Organization to Collaborate with Health-RI To Optimize their Respective FAIR Training Efforts

Five FAIR Neuromuscular Rare Disease Registries Now Provide Joint Answers to Questions from Researchers or Patients

The 3rd International Meeting on FAIR Data Visiting for Duchenne, Becker & Other Rare Diseases

Register for the FAIR training March 2023

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

FAIR Data Sharing Without Oversharing

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

Innovative and Sustainable FAIR solution for Duchenne Data Platform

How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care

Meeting on Data Sharing for Duchenne

Patient centered and interoperable registry hub for Rare Neuromuscular Diseases

Highlights on Data sharing for Duchenne meeting

Road to independence: Documentary about young people with NMD

Webinar Recording: Understanding the role of dystrophin in the brain in DMD/BMD

Applications now open for Duchenne Patient Academy 2024