European Joint Programme on Rare Diseases

Project Details


Rare diseases (RD) research remains fragmented throughout Europe, resulting in delays in diagnosis, fewer medicines and reduced access to care. This research domain could greatly benefit from better coordination within and beyond Europe. The EU-cofunded EJP RD project (130 institutions, 35 countries) is developing an effective RD research ecosystem to address this issue. It improves the integration, effectiveness and social impact of RD research by developing, demonstrating and promoting Europe/world-wide research, and sharing clinical data, resources, procedures, knowledge and expertise. It also carries out and further establishes an efficient financial support model for all RD research types coupled with accelerated exploitation of research results for the benefit of patients.
Short titleR:ERZ Goble H2020 EJPRD
Effective start/end date1/01/1931/12/23

Collaborative partners

UN Sustainable Development Goals

In 2015, UN member states agreed to 17 global Sustainable Development Goals (SDGs) to end poverty, protect the planet and ensure prosperity for all. This project contributes towards the following SDG(s):

  • SDG 15 - Life on Land


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  • Towards a common standard for data and specimen provenance in life sciences

    Wittner, R., Holub, P., Mascia, C., Frexia, F., Müller, H., Plass, M., Allocca, C., Betsou, F., Burdett, T., Cancio, I., Chapman, A., Chapman, M., Courtot, M., Curcin, V., Eder, J., Elliot, M., Exter, K., Goble, C., Golebiewski, M., Kisler, B., & 16 othersKremer, A., Leo, S., Lin-Gibson, S., Marsano, A., Mattavelli, M., Moore, J., Nakae, H., Perseil, I., Salman, A., Sluka, J., Soiland-Reyes, S., Strambio-De-Castillia, C., Sussman, M., Swedlow, J. R., Zatloukal, K. & Geiger, J., 18 Apr 2023, (E-pub ahead of print) In: Learning Health Systems. e10365.

    Research output: Contribution to journalComment/debatepeer-review

    Open Access
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