European Joint Programme for Rare Diseases

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.

  1. Scope of the project
  2. Why is this project important for the rare disease community?
  3. Objectives of the project
  4. Role of EURORDIS
 

Scope of the project

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.

EJP focusses on maximising the potential of already funded tools and programmes by supporting them further, scaling up, linking, and adapting them to the needs of end-users through implementation tests in real settings.

  • Date: 01/01/2019-31/12/2023
  • Website: https://www.ejprarediseases.org/
  • Overall project budget: 55 million € contribution from the EC extending to 101 million € of MS contribution and in-kind from partners
  • Partners: : EJP RD is coordinated by the French National Institute for Health and Medical Research (INSERM) with 130 partner institutions
  • EURORDIS contact: Virginie Bros-Facer, Scientific Director, virginie.bros-facer@eurordis.org

Why is this project important for the rare disease community?

The EJP RD demonstrates how the centralised collaboration between different stakeholders advances rare disease (RD) research for the benefit of patients.

The bridges built between expanded RD research community and the European Reference Networks allow the advancement of RD Virtual Platform and common approach to standards, registries, data and FAIRification. Integration of patients in all activities and close collaboration with funders leads to the long-expected mind-set changes on patient-centred research.

Objectives of the project

EJP RD has two major objectives:

1. To improve the integration, the efficacy, the production and the social impact of research on RD through the development, demonstration and promotion of Europe/world-wide sharing of research and clinical data, materials, processes, knowledge and know-how.

2. To implement and further develop an efficient model of financial support for all types of research on RD (fundamental, clinical, epidemiological, social, economic, health service) coupled with accelerated exploitation of research results for benefit of patients.

To this end, the EJP RD actions are organised within five major Pillars assisted by the central coordination and transversal activities:

Pillar 0: Transversal and Communication
Pillar 1: Funding of research
Pillar 2: Coordinated access to data and resources
Pillar 3: Capacity building
Pillar 4: Accelerated translation of research projects and improvement outcomes of clinical studies

Role of EURORDIS

EURORDIS has been involved in the strategic development of the proposal and as such is a member of the Operating Group, which includes the leaders of the different pillars. Indeed, EURORDIS is co-leader of Pillar 3 (capacity building and empowerment training courses for all relevant stakeholders including RD patient representatives) which in itself includes 45 partners across 5 work packages. EURORDIS has coordinated efforts to pull together a coherent programme of training courses and support activities within an adequate budget. EURORDIS is also involved in the transversal activities within Pillar 0 as well as Pillar 1 and Pillar 4.

This project is co-funded by the European Union
This project has received funding from European Union's Horizon 2020 research and innovation programme

 

The information contained in this publication does not necessarily reflect the official position of the European Commission.

Page created: 05/11/2019
Page last updated: 05/11/2019
 
 
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