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. In addition, the ERNs can benefit from competitive funding opportunities, specific support for FAIRification, innovation management and multinational clinical trials as well as dedicated trainings on cross-cutting topics and EU-wide streamlined educational programme on RD research provided to all interested stakeholders.