European Joint Programme on Rare Diseases (EJP RD)

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions (including all 24 ERNs)  from 35 countries: 26 EU Member States (Austria, Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Croatia, Ireland, Italy, Netherlands, Latvia, Lithuania, Luxembourg, Malta, Poland, Portugal, Romania, Spain, Sweden, Slovakia, Slovenia); 7 associated (Armenia, Georgia, Israel, Norway, Serbia, Switzerland, Turkey) and  UK & Canada to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.

As recognized by the Council Recommendation 2009/C 151/02, rare diseases (RD) are a prime example of a research area that can strongly profit from coordination on a European and international scale. RD research should be improved to overcome fragmentation, leading to efficacious use of data and resources, faster scientific progress and competitiveness, and most importantly to decrease unnecessary hardship and prolonged suffering of RD patients.

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 organized within four major Pillars assisted by the central coordination and transversal activities.

For more information contact dr. Živilė Ruželė e.p.  zivile.ruzele@lmt.lt