European Joint Programme on Rare Diseases
The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.
Rare Disease 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.
The EJP RD has two major objectives:
- 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
- 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 ERNs are included in all four pillars of the EJP RD programme. Endo-ERN plays a leading role in the ERN Rare Disease training and support programme (Work Package 17), through development of an online survey that aims to collect information that is needed to optimally feed the development of specific research training programmes for the ERNs. Furthermore we contribute to pillars 2, 3, and 4.