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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 March 2023
Register for the FAIR training for March 2023: Understanding the value and future impact of the FAIR Guiding Principles.
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…