Other research information
European Joint Programme on Rare Diseases (EJP-RD)
WHAT IS EJP RD?
The European Joint Programme on Rare Diseases (EJP RD) consortium brings over 130 institutions from 35 countries (27 EU countries, 7 associated, and Canada) to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care, and medical innovation on rare diseases.
EJP RD MISSION & GOALS
EJP RD's mission is to improve the rare disease research at European and international levels by overcoming fragmentation, enabling effective access and use of rare disease information, research data, and services to optimize exchange of knowledge between research and clinical practice.
Further goals are to foster rapid scientific progress in the field of rare diseases through funding of collaborative research projects, to accelerate the translation of high potential projects as well as to improve outcomes of clinical studies.
Ultimately and most importantly these actions aim to decrease unnecessary hardship and prolonged suffering of rare disease patients.
The EJP RD brings together the resources at the national and European levels involving research funders and organisations, EU research infrastructures together with universities, hospitals, and patient organisations.
EJP RD & ERNs
All 24 European Reference Networks are involved in the EJP RD with at least one healthcare provider per Network as official EJP RD partner. Through them, the programme links with expert centers providing highly specialized care in more than 300 hospitals across Europe, thus ultimately enabling the necessary connection between research and healthcare including accelerated integration of relevant resources (registries, biobanks, data, etc.) into Virtual Platform of data and services of the EJP RD. ERN GENTURIS is specifically engaged in organisation of the online course “Diagnosing Rare Diseases: From the Clinic to Research and Back", the ERN Research Mobility Fellowships and ERN Training Workshops.
European Rare Disease Research Coordination and Support Action (ERICA)
About ERICA
The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.
Through knowledge sharing, engagement with stakeholders in the rare disease domain and assembly of transdisciplinary research groups working across the global health spectrum, ERICA strives to reach the following goals:
- new intra- and inter-ERN rare disease competitive networks;
- effective data collection strategies;
- better patient involvement;
- enhanced quality and impact of clinical trials;
- increased awareness of ERNs innovation potential.
ERICA will strengthen research and innovation capacity by the integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact and innovation. This will result in efficient access and safe therapies for the benefit of patients suffering from rare diseases and complex conditions.
You will find more information about the project on the ERICA website.