The successful linking of research funding organizations in E-Rare-1 and the subsequent exemplary joint funding activities have attested the need of, and the acknowledgment from, the research community for transnational funding of collaborative, multidisciplinary and ambitious projects on rare diseases. It has leveraged funding for rare disease research in countries without specific programmes for rare diseases and thus enabled the participation of researchers in these countries to transnational projects.
 
The current E-Rare-3 project will extend and strengthen the transnational cooperation on rare disease research funding organizations in the 5-year period of 2015-2019 by building on the experience and results of the previous ERA-Net programmes E-Rare-1 and E-Rare-2. It aims to provide an international model platform for implementing Joint Transnational Calls. The consortium comprises 25 institutions from 17 European, Associated and non-European countries. Its international dimension will be directly translated into close collaboration with IRDiRC and other relevant European and international initiatives.

Objectives

E-Rare-3 will build on the experience and results of the previous E-Rare-1 & E-Rare-2 ERA-Nets, its main objectives are:

Maximizing scarce resources and coordinating research efforts are key elements for success in the area of rare diseases. The main objectives of E-Rare-3 are:

1. Funding transnational collaborative research through yearly joint transnational calls contributing to IRDiRC objectives

The co-fund call will enable pooling of resources that are available for transnational collaboration on rare disease research from national and regional programmes in 17 countries complemented by the European Commission for a total of almost 20 Mio€ to fund research on rare diseases with particular attention to implement the objectives of IRDiRC. The co-funded call will be prepared and launched according to the selection procedure and to the guidelines of the EC. The call will aim at furthering the understanding of disease mechanisms and natural history of rare diseases with the objective to develop new diagnostic tools and treatments. The information on the compliance to the IRDiRC guidelines and policies will be clearly stated in the call text and all communication documents related to the call. The objectives of IRDiRC will be further pursued by the launch of three other Joint Transnational Calls (without EC co-funding).

2. Development of the strategic research agenda

Research needs will be gathered from the Commission Expert Group on Rare Diseases and from national, European and other international organizations, networks and projects. Collaboration with FP7-funded project RARE-Bestpractices will also be established. The content of the Rare-Bestpractices research recommendation database will provide a valuable information resource for the Joint Transnational Calls. The representiatives of IRDiRC Scientific Committees will be invited as members of E-Rare External Advisory Board that will be consulted at the occassion of strategic workshops.

3. Strenghten the collaboration with European Research Infrastructures

Collaboration bewteen several EC-funded research infrastructures (EATRIS, ECRIN, BBMRI, EU-OPENSCREEN, INFRAFRONTIER) will be reinforced so that rare diseases research projects funded under E-Rare calls can benefit from their knowledge and services.

4. Involvement of patients' associations in research funding

The strength of the E-Rare consortium of public funding organizations relies on its capacity to maximize the resources for rare disease research by collaborating in Joint Transnational Calls. The need to drive research and its translation for better prevention, diagnosis and treatment is also expressed by rare disease patient organizations. In collaboration with EURORDIS E-Rare-3 will develop a model to proactively involve patients organizations in the funding of E-Rare’s Joint Transnational Calls.

5. Transforming E-Rare into a sustainable network

The previous EC funding for E-Rare was instrumental to get the consortium to its current state of effectively collaborating, discussing and adjusting strategic issues and managing JTCs. The new mechanism of the ERA-Net co-fund implemented for E-Rare-3 will be the basis for consolidation and further development of the E-Rare network.

6. Ensuring that all stakeholders are actively engaged in, and informed on, the activities of E-Rare

E-Rare 2012 - Created by Toussaint Biger