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Register for the FAIR training for March 2023

Register for the FAIR training March 2023

The World Duchenne Organization is pleased to announce that thanks to a collaborative initiative driven by their technical partners, FAIR Data Systems in Madrid, a FAIR Training Program will be available online to all those interested in understanding the value and future impact of the FAIR Guiding Principles.

This is the outcome of the latest international FAIR meeting on data visiting for Duchenne and other Rare Diseases, where training needs by various stakeholders were identified. It is an opportunity to understand how the FAIR principles framework makes sure that valuable data are found and reused by others to boost research and earlier diagnosis.

Learning objectives

  • To understand the value and benefits of FAIR
  • To show the participants tangible examples on how to query FAIR data
  • To know what is needed to get started with a FAIR-related project

Time and location

7 – 9 March 2023 (Mornings) | Online
The training will be given through a Zoom webinar.


Registration is required. Click on the button below to register for the FAIR training before March 1, 2023.
The webinar link will be sent to you after registration.

Please register here before March 1, 2023

Target group

We invite all representatives of rare disease patient organizations, healthcare providers, researchers, funders, data stewards, or anyone interested in finding out more about how to make data Findable, Accessible, Interoperable and Reusable for both humans and machines to attend.

Cost: Free

Training outline

You’re welcome to attend the full or part of the program.


Full Program

Session I:

7 March 2023 |10:00 – 13:00 (CET)
General Overview on the FAIR Guiding Principles & Benefits of making data FAIR

Session II:

8 March 2023 10:00 – 13:30 (CET)
In-depth knowledge on a FAIRification process & Related Services

Session III:

9 March 2023 |10:00 – 13:30 (CET)
FAIR Project Management and Technical Interactive Sessions

FAIR: 5 key facts

The FAIR guiding principles¹ offer a set of practices and protocols for sharing data respecting any ethical, legal, contractual or privacy restrictions. In the context of Rare Diseases, FAIR means making data and resources Findable, Accessible, Interoperable and reusable for both humans and machines.

  1. Implementing FAIR helps answer complex questions related to Duchenne Muscular Dystrophy for example, efficiently and correctly by accessing information in multiple sources automatically.
  2. Making data Findable enables people to know if the data they want exist already. It allows the discovery of interesting datasets.
  3. Making data Accessible helps authorized researchers to benefit from additional datasets under well-defined conditions, for example: “Access only with explicit permission from the author”.
  4. Making data Interoperable makes it easy to link and merge data related to the same topic by both humans and computers to gain better insights.
  5. Reusable data encourage collaboration and avoid duplication of effort. It helps people know what they can do and cannot do with the data (source, license, consent, ethical approval)

Useful pre-reads

  1. How Patient Organizations can drive FAIR efforts to facilitate Research
  2. FAIR Data Sharing without Oversharing
  3. The FAIR Guiding Principles for Scientific Data Management and Stewardship
    [1] Wilkinson MD, Dumontier M, Aalbersberg IJ, et al. The fair guiding principles for scientific data management and stewardship. Sci Data 2016;3:160018.
Initiator Host and Sponsor

In collaboration with