European Joint Programme on Rare Diseases

Funding programme: Horizon 2020 (N 825575)

Budget: €55M

Coordinator: Institut National de la Santé et de la Recherche Médicale (INSERM)

Duration: 5 years (Jan 2019 - Dec 2023)

Rare diseases are a major challenge that requires integrated and collaborative efforts from a wide range of stakeholders. To take rare disease collaborative research in Europe to the next level and support achievement of the IRDiRC 2027 goals, the European Commission has approved the European Joint Programme on Rare Diseases (EJP-RD), an EU-wide and patient-centred initiative to foster rare disease research from bench to bedside and back. The programme will receive 55 million EUR over 5 years to establish a comprehensive strategy covering funding, research, data, training, tools and clinical aspects to increase the efficiency of results use, diagnosis, drug discovery, patient care and to empowering all stakeholders.

EJP-RD goals include:

  • enabling sustainable and interoperable data re-use and sharing based on FAIR principles (Findable, Accessible, Interoperable, Re-usable);
  • structuring the connection with European Reference Networks;
  • funding high-quality, transformative research, enhancing uptake of research results for translation into healthcare and effectively transferring innovation for exploitation by SMEs and industry;
  • promoting adapted research methodologies for rare disease research;
  • providing capacity building to all relevant stakeholders for better research in the future;
  • ensuring patient involvement in all steps of the research pathway.

This work will be organised into four pillars: I) Collaborative research funding; II) Innovative coordinated access to data and services; III) Capacity building and empowerment; IV) Accelerating translation of high potential projects and improving outcomes of clinical trials in small populations.

Download a poster presenting ECRIN's role in the project (presented at the 7th RD Summer School, 2019) 

This initiative has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement number 825575.

ECRIN's role in EJP-RD

At EJP, ECRIN holds the secretariat of the The Clinical Studies Support Office (CSSO). The CSSO intends to support the Rare Diseases/ERN clinical investigators in the preparation of clinical studies for the development of new treatments and for drug or device repurposing. In the frame of the CSSO, ECRIN has developed the RD clinical trials toolbox.