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EJP RD – European Joint Programme on Rare Diseases EJP RD – European Joint Programme on Rare Diseases
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    • FUNDING OPPORTUNITIES
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    • PATIENTS IN RESEARCH
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      • What is the virtual platform?
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    • TRAINING
      & EDUCATION
      • General Information on Training
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    • RESEARCH TRANSLATION SUPPORT OFFICE
      • Innovation Management Toolbox
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    • CLINICAL STUDIES SUPPORT OFFICE
      • Support office
      • Rare Diseases Clinical Trials Toolbox
      • Clinical Trials Methodology
    • ETHICS & REGULATORY ADVICE
      • Introduction to AREB
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Tag: patients

EJP RD - European Joint Programme on Rare Diseases - News and events - News - patients
  • 22 Mar
  • 2023

Solve-RD Public Symposium: The Impact of Solve-RD on Research & Care of Rare Disease Patients

  • News

Solve-RD, a research project funded by the European Commission for five years (2018-2022), having the ambitious goals set out by the International Rare Diseases […]

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  • 06 Jul
  • 2022

General Assembly of TEDDY Network

  • EJP RD News, News

The General Assembly of TEDDY Network will be held online, within a hearing at the Council of Europe this July […]

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  • 03 Mar
  • 2022

Training for patient representatives and advocates on leadership and communication skills

  • EJP RD News, News

As part of the training activities proposed by EJP RD, an international course entitled “Training for patient representatives and advocates on leadership […]

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  • 17 Dec
  • 2021

UN General Assembly formally adopts Resolution on Persons Living with a Rare Disease and their Families

  • News

Following a sustained campaign by rare disease patient advocacy organisations such as Rare Diseases International and with the support of […]

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  • 19 Nov
  • 2021

EURORDIS Photo Award 2022

  • News

The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and […]

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Latest Posts

  • Together4RD’s newly published Position Statement on collaboration between ERNs and industry
  • New Publication: Making Rare Disease Research Attractive to Companies by IRDiRC Chrysalis Task Force
  • Call for proposals: Establishing novel approaches to improve clinical trials for rare and ultra-rare diseases
  • Registrations for the 2023-2024 session of the Inter-University Diploma of Myology (DIU de Myologie) are open! 
  • EJP RD Online Training: Item response models for analysing assessments in rare diseases

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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

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