Skip to content
EJP RD – European Joint Programme on Rare Diseases EJP RD – European Joint Programme on Rare Diseases
x
  • What is EJP RD?
    • Project structure
    • EJP RD Impact
    • Beneficiaries
    • Governance
    • Our publications
    • EJP RD Coordination Team
    • Careers
    • Privacy policy
  • Our actions and services
    • FUNDING OPPORTUNITIES
      • Open Funding Opportunities
      • Past Funding Opportunities
      • Funded projects
    • PATIENTS IN RESEARCH
    • VIRTUAL PLATFORM OF DATA AND RESOURCES
      • What is the virtual platform?
      • What do we do?
      • Resources for RD Research
      • FAIRification
      • Services and Events
    • TRAINING
      & EDUCATION
      • General Information on Training
      • RD Research Training
      • Patients Training
      • ERN Workshops
      • Online Academic Education Course
    • RESEARCH TRANSLATION SUPPORT OFFICE
      • Innovation Management Toolbox
      • Mentoring for Translational Research
      • Follow-on funding support
    • CLINICAL STUDIES SUPPORT OFFICE
      • Support office
      • Rare Diseases Clinical Trials Toolbox
      • Clinical Trials Methodology
    • ETHICS & REGULATORY ADVICE
      • Introduction to AREB
      • Key Ethics & Regulatory Documents
      • ERN Registries Generic Informed Consent Forms
  • News and events
    • News
    • EJP RD Events
    • Other RD Events
    • EJP RD Newsletter
  • Helpdesk

Tag: FAIR

EJP RD - European Joint Programme on Rare Diseases - News and events - News - FAIR
  • 10 Feb
  • 2023

World Duchenne Organization’s FAIR Training Program

  • News

The World Duchenne Organization is pleased to announce that thanks to a collaborative initiative driven by their technical partners, FAIR […]

Read More
  • 04 Mar
  • 2022

EJP RD presents the FAIRopoly board game: FAIRification Guidance for ERN Patient Registries

  • EJP RD News, News

The board game FAIRopoly developed by EJP RD illustrates the FAIRification steps followed by the ERNs registries to make their […]

Read More
  • 03 Mar
  • 2022

International Summer School 2022: Rare Disease Registries and FAIRification of Data

  • EJP RD News, News

As part of the training activities proposed by EJP RD, the International Summer School on Rare Disease Registries and FAIRification of […]

Read More
  • 26 Oct
  • 2021

BioData World Congress 2021: Big Data and Digital Transformation in Pharmaceuticals and Healthcare

  • News

The BioData World Congress 2021 organised by Terrapinn is Europe’s largest congress covering big data in pharmaceutical development and healthcare aimed to […]

Read More

European Commission (EC) opens funding call on development of new effective therapies for rare diseases

  • Posted on20 October 2021
  • EJP RD News

On October 6th, 2021, the European Commission (EC) opened a new funding call titled “Tackling diseases (Two Stage – 2022) […]

Read More
  • 18 Oct
  • 2021

New Report: How patient organizations can drive FAIR data efforts to facilitate research and healthcare

  • News

Last March, the World Duchenne Organization in collaboration with Duchenne Data Foundation organized the second Meeting on FAIR Data Sharing […]

Read More
  • 14 Oct
  • 2021

First rare disease registry that is FAIR from its conception is now online

  • News

All ERNs are tasked to set up patient registries that follow the FAIR Principles, as these ‘FAIR registries’ are essential […]

Read More
  • 18 Jun
  • 2021

International Summer School 2021: Rare Disease Registries and FAIRification of Data

  • EJP RD News, News

As part of the training activities proposed by the EJP RD, the International Summer School on Rare Disease Registries and […]

Read More
  • 11 May
  • 2021

FAIRplus Project Webinar: Discovering the FAIR Cookbook

  • News

The FAIRplus project, which aims to develop tools and guidelines for making life science data FAIR (Findable, Accessible, Interoperable, Reusable) […]

Read More

Search

Categories

  • EJP RD News
  • ERN-Research (ERICA)
  • Networking events funded by EJP RD
  • News
  • Uncategorized

Popular Tags

biobank clinical research clinical trial conference drug repurposing duchenne ejp rd EJPRD ema ERICA ERN ern research training workshops eurogen european commission EURORDIS event FAIR fda funding funding opportunity gene therapies genomics health data innovation irdirc MOOC networking networking event networking support scheme NSS OMP regulation orphan drugs paediatric patient patients rare disease day rare diseases report survey symposium training virtual event webinar workshop world duchenne organization

Latest Posts

  • RE(ACT) Congress & IRDiRC Conference held in Berlin [PRESS RELEASE]
  • Solve-RD Public Symposium: The Impact of Solve-RD on Research & Care of Rare Disease Patients
  • New EJP RD – ERN Workshop on Fetal and Postnatal multidisciplinary management in Rare Diseases – Myelomeningocele (MMC) and Lower urinary tract obstruction (LUTO)
  • Training for patient representatives and advocates on leadership and communication skills
  • DEADLINE EXTENDED: EJP RD – ERN Workshop: Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)

Featured Links

  • Helpdesk
  • Sitemap
  • Careers

Where we are

  • EJP RD INSERM Hôpital Charles-Foix
    7 avenue de la République
    94200 Ivry-sur-Seine
    France

The EJP RD initiative has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement N°825575

© Copyright EJP RD.
×
You must be logged in before using WishList. To login click here