European Joint Programme on Rare Diseases brings over 130 institutions from 35 countries


27 EU Member States (Austria, Belgium, Bulgaria, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Croatia, Ireland, Italy, Netherlands, Latvia, Lithuania, Malta, Poland, Portugal, Romania, Spain, Sweden, Slovakia, Slovenia, United Kingdom), 7 associated (Armenia, Georgia, Israel, Norway, Serbia, Switzerland, Turkey) and 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.

In the specific context of the massive generation, need for reuse and efficient interpretation of data, introduction of omics into care practice and the structuration of RD care centers in European Reference Networks, it appears crucial and timely to maximize the potential of already funded tools and programmes by supporting them further, scaling up, linking, and most importantly, adapting them to the needs of end-users through implementation tests in real settings. To achieve this goal, the European Joint Programme on RD (EJP RD) has two major objectives:

(i) 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;
(ii) 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:

Pillar 1: Funding of research;
Pillar 2: Coordinated access to data and resources;
Pillar 3: Capacity building;
Pillar 4: Accelerated translation of research projects and improvement outcomes of clinical studies.

EJP RD web page: http://www.ejprarediseases.org/

Calls

The E-Rare ERA-Net has successfully implemented ten Joint Transnational Calls for rare disease research projects since 2006. This effort is now continued in the frame of the European Joint Programme on Rare Diseases (EJP RD) that has been established to further help in coordinating the research efforts of European, Associated and non-European countries in the field of rare diseases and implement the objectives of the International Rare Disease Research Consortium (IRDiRC).

Pillar 1 of the EJP RD will foster joint transnational calls for collaborative research projects resulting in funding encompassing various research fields of rare diseases in continuation of previous E-Rare calls (WP6). It will also fund the Networking Scheme (WP7) to encourage sharing of knowledge on rare diseases between clinicians, (biomedical) scientists and patient organizations as well as the Rare Disease Research Challenges (WP8) which is an innovative funding scheme to foster private-public partnerships and multi-stakeholder collaborations. All these funding activities will be tightly monitored (WP9).

1st EJP RD Joint Transnational Call for Rare Diseases Research Project (JTC 2019)

The submissions of pre-proposals are now CLOSED.

Call web page: http://www.ejprarediseases.org/index.php/funding-schemes/general-information/