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EJP RD – European Joint Programme on Rare Diseases EJP RD – European Joint Programme on Rare Diseases
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Tag: registry

EJP RD - European Joint Programme on Rare Diseases - News and events - News - registry
  • 11 Aug
  • 2022

The Smart Guidance tool for the FAIRification of rare disease registries is now available

  • EJP RD News

The EJP RD is proud to announce that the Smart Guidance tool for the FAIRification of rare disease registries was […]

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  • 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 […]

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  • 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 […]

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  • 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 […]

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Latest Posts

  • New EJP RD – ERN Workshop: Desmoid tumors (DTs) in patients with Familial Adenomatous Polyposis (FAP): an interdisciplinary approach
  • Satisfaction Survey for EJP RD services
  • Training on Strategies to Foster Solutions of Undiagnosed Rare Disease Cases: Registration Open
  • AFM-Téléthon launches Scientific and Medical Research Call for Proposals for 2023
  • EJP RD Joint Transnational Call 2023: Now Open!

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  • 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

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