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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: survey

EJP RD - European Joint Programme on Rare Diseases - News and events - News - survey
  • 05 Dec
  • 2022

Survey for SRIA in support for the EP PerMed

  • News

The European Partnership for Personalised Medicine (EP PerMed) Drafting Group, representing the European Members States group, is launching an open consultation to […]

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  • 05 Jul
  • 2022

IRDiRC releases State of Play 2019-2021

  • News

The International Rare Diseases Research Consortium (IRDiRC) is pleased to announce today the release of its Rare Diseases Research Initiatives […]

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  • 24 Jun
  • 2022

Questionnaire on health system resilience in the context of rare diseases

  • News

Gelareh Emami, a PhD student at the Department of Health Management at Scuola Superiore Sant’Anna, under the supervision of Prof. Giuseppe […]

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  • 06 May
  • 2022

Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease

  • News

RDI is partnering with the EURORDIS Rare Barometer Survey project to launch the Global Survey on the Journey to Diagnosis […]

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  • 04 May
  • 2022

GA4GH: Seeking feedback on Data Access Committee procedures

  • News

The GA4GH Data Access Committee Review Standards subgroup has put together a brief survey on implementation factors when using software or […]

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  • 20 Oct
  • 2021

Open consultation of the Strategic Research and Innovation Agenda (SRIA) of the European Partnership ERA4Health

  • News, Uncategorized

The European Commission (EC) is inviting interested stakeholders to participate in the open consultation of the Strategic Research and Innovation […]

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  • 03 Sep
  • 2021

EPTRI and RESTORE Survey on paediatric Advanced Therapies Medicinal Products (ATMP) expertise

  • News

Innovative techniques in the biomedical field (such as massive sequencing capacity, gene editing and tissue engineering) have resulted in the development of new unconventional drugs in […]

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  • 01 Apr
  • 2021

WANTED: Your View on Networking (Survey)

  • EJP RD News

What are your wishes and needs for networking? And how is this changed due to the COVID-19 pandemic? We are […]

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  • 26 Mar
  • 2021

Call for expression of interest – Data Standards Strategy survey and workshop

  • News

The Big Data Steering Group has launched an initiative to develop a Data Standards Strategy that will enable the Network to more […]

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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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