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The European Joint Programme on Rare Diseases, an opportunity for the ERNs to leverage on research

European Joint Programme on Rare Diseases

The European Joint Programme on Rare Diseases (EJP RD) brings together over 130 institutions to create a comprehensive and sustainable ecosystem allowing a virtuous circle between research, care and medical innovation around rare diseases. All 24 ERNs are fully active in this important initiative.

Thirty five countries are represented: 26 EU countries (Austria, Belgium, Bulgaria, Czechia, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Croatia, Ireland, Italy, the Netherlands, Latvia, Lithuania, Luxembourg, Malta, Poland, Portugal, Romania, Spain, Sweden, Slovakia, Slovenia), 7 associated countries (Armenia, Georgia, Israel, Norway, Serbia, Switzerland, Turkey), the UK and Canada.

Research into rare diseases should be continuously improved to overcome fragmentation, make more efficient use of data and resources, faster scientific progress and improve competitiveness to decrease unnecessary hardship and prolonged suffering of rare disease patients. Thus, it is crucial to strengthen the collaboration between the EJP RD and the European Reference Networks (ERN) to accelerate the adoption of diagnosis and treatment solutions for rare disease patients. Now is the right time to maximise such potential by taking advantage of funded tools, programmes and training opportunities. How? By scaling up, linking, and adapting them to the needs of end-users by assessing how the tools work in real settings. To this end, EJP RD can provide invaluable support to the ERNs in terms of funding opportunities, targeted calls, training and direct involvement in the EJP RD actions.

In detail, several possibilities are open to the ERNs. The Rare Diseases Research (RDR) Challenge call is currently open, Research Mobility Fellowships, Networking Support Scheme (NSS) call, and diverse training and support programmes are running all year. Direct involvement in the creation of the Virtual Platform (VP) of data and resources and corresponding support services such as integration/support for (i) existing & new registries of ERNs, (ii) FAIRification, (iii) access to data/resources/tools, (iv) use cases definition to guide VP development. EJP RD also facilitates the bridging process between research and medicine and offers free support for ERNs interested in multinational clinical trials and innovation strategies. Furthermore, the EJP RD Central Helpdesk is available for ANY inquiries & access to expertise and services dedicated to rare diseases.