Training for Resources joining the Rare Diseases Virtual Platform

  • 28 juin 2024 - 10:00
  • Online

This training is intended for resources that would like to connect to the Virtual Platform (VP) that is developed in the context of the EJP RD Pillar2 activities.

At the end of this webinar, you will be able to:

  • Describe how to interact with the Virtual Platform as part of a network of connected resources
  • Identify different means to onboard the Virtual Platform at Level 1 and Level 2 including the following
    • Metadata model
      • Structure of the metadata model and how to implement it
    • FDP Index
      • Network of connected resources
    • Beacon-in-a-box
      • Present data to the VP via a Beacon endpoint
    • FAIR-in-a-box
      • Present data to the VP using ontologies and semantic models
    • Metadata validator
      • Tool to check the compliance of your metadata

This training is divided in three parts:
The first part of the webinar consists of a 30-minute description of the Virtual Platform and the advantages of connecting your resource to the Virtual Platform.
In the second part of the webinar (one hour) will showcase different ways to onboard the Virtual Platform.
In the third part of the webinar (30 minutes) will be dedicated to an interactive Q&A session with the technical experts.

The training webinar is organized as a series of presentations and interactive sessions  presented by experts in the specific topics. Interaction between participants and lecturers will be facilitated by moderated question & answer sessions. 

The training is open to any resources with data or information that is related to the rare disease field.

The registration will be via the following link:

A calendar invitation enclosed with personal connection link will be sent to you as soon as you register.

The training and registration are free of charge.

At the end of the training, participants will be requested to fill an online questionnaire as feedback for learning and impact assessment.

The language of the training webinar is English.

Online, MS Teams. Details for the connection will be provided in advance to confirmed participants.




10:00 – 10:30 CEST

Overview of the VP

Franz Schaefer

VP Portal demo

Abishaa Vengadeswaran

Advantages of a resource joining the VP

César Bernabé

10:30 – 11:30 CEST

Onboarding process

Nirupama Benis

Metadata model

Marc Hanauer

FDP Index

Luiz Bonino da Silva Santos

Beacon in a Box

Anthony Brookes

FAIR in a Box

Mark Wilkinson

Metadata validator

Mark Wilkinson

11:30 – 12:00 CEST

Q&A session

Nirupama Benis

This Training webinar is organized by the European Joint Programme on Rare Diseases.If you have questions, please contact the course organisers with this email address, indicating the title of the training.


  • Start Date:28 juin 2024
  • Start Time:10:00
  • End Date:28 juin 2024
  • End Time:12:00
  • Location:Online