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EJP-RD: European Joint Programme Rare Diseases

The European Joint Program on Rare Diseases (EJP-RD) is a program aiming to create an effective rare diseases research ecosystem for progress, innovation and for the benefit of everyone with a rare disease. The program supports rare diseases stakeholders by funding research, bringing together data resources & tools, providing dedicated training courses, and translating high quality research into effective treatments. 

The 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. 

The European Joint Program on Rare Diseases (EJP-RD) brings over 130 institutions from 35 countries, including 4 European biomedical research infrastructures (ELIXIR, EATRIS, BBMRI, and ECRIN) that provide research infrastructure services and resources.  

The EJP-RD project started January 2019 with a duration of 5.5 year, and has received funding from the European Union’s Horizon 2020 research and innovation program under grant agreement N°825575 .

For research, policy and innovation in the domain of Rare Disease, a national Health and Life Science data infrastructure that is connected to a European infrastructure ecosystem is essential. Given that the number of patients for most of these diseases is very small 

 the nature of these diseases, research can often only be conducted by working together with researchers, patients and clinicians from multiple countries, and can be accelerated through research infrastructure services and resources. 

In the EJP-RD project, Health-RI contributes primarily to the following topics: 

  1. Sustainability strategy (including technical sustainability) and business plan (work package 3 and task 10.5) 

  2. Training on data management & quality (work package 14) 

Beside Health-RI, 8 other organization from the Netherland participate in EJP-RD:  
Amsterdam University Medical Center, University Medical Center Groningen, Leiden University Medical Center, Radboud university medical center, Erasmus Medical Center, Utrecht University Medical Center, Maastricht University and The Netherlands Organisation for Health Research and Development (ZonMw). 

In 2024, the European Joint Programme on Rare Diseases efforts are expected to continue under the umbrella of the European Rare Diseases Research Alliance (ERDERA). 

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Origin ELIXIR-NL
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