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.

Work Plan

E-Rare-3 action is divided into two major parts:

Part A: Activities related to the co-funded call and the consortium management

Workpackage 1: Consortium coordination & management (ANR, France)
E-Rare-3 project comprises 25 partners from 17 countries. The membership of E-Rare within the Executive Board of IRDiRC will be extended. The existing management structures will be tailored to collaborate efficiently with the already adjoined rare disease funding organizations of European, Associated and third partner countries and to further enlarge the consortium with member organizations of IRDiRC.

Workpackage 2&3: Co-funded call (DLR, Germany)
The co-funded call will be organized in 2015 (JTC 2015) and will result in funding the most excellent transnational research projects for rare diseases. This co-funded call will implement the IRDiRC identified priorities, namely to support the delivery of 200 new therapies for rare diseases and means to diagnose most of them by the year 2020. This call will combine budget contributions from the participating European and Associated member states, the European Commission and additional research funders in order to maximize the synergies of funding transnational research projects for rare diseases. 23 institutions from 17 countries have indicated their intention to fund rare disease projects for at least 14.5 Mio€. In addition the Commission will contribute with around 5 Mio€.  

Workpackage 4: Monitoring and assessment of projects funded through E-Rare-3 co-funded call (FNRS, Belgium)
Co-funded projects will be monitored and assessed. A list of measurable indicators was previously established (E-Rare-2) and will be refined to monitor the progress and assess the outputs of the research projects. Moreover, an online tool will be implemented to follow up and monitor the co-funded projects in an efficient way. Projects will be evaluated with respect to their proposed working plan as well as to IRDiRC objectives and policies.

Workpackage 5: Communication, exploitation and dissemination of results from co-funded call (CSO-MOH, Israel)
This WP is responsible for preparing and supporting the dissemination strategy for the co-funded call launch as well as the research results of the funded research projects. Dissemination activities featuring/promoting the research achievements and impact of the research projects funded by the co-funded call will be a central knowledge translation activity that will reach out to the broader rare diseases research community and key stakeholders, including patients organizations and the public.

Part B: Additional activities

Next to the work dedicated to the co-funded call other activities planned throughout the 5 years of the E-Rare 3 project are:

Workpackage 6: Funding of transnational research cooperation contributing to IRDiRC objectives (ISCIII, Spain)
In the years following the co-funded call three additional (non co-funded) Joint Transnational Calls are planned. Although it is ambitious to organize annual calls the E-Rare consortium is confident that this is feasible. The E-Rare-2 programme successfully organized four annual JTCs in the period 2010 - 2014. E-Rare has established a flexible model of joint calls with a variable geometry (i.e. each partner decides to join one, two or three non co-funded calls, depending on their legal, policy and financial possibilities and commitments) particularly relevant for the constantly growing number of funding organizations that join E-Rare. Thus E-Rare-3 will contribute further to pooling of available resources for international rare disease research and fulfill the yet unresolved need of IRDiRC for the concerted transnational funding of rare diseases research.

Workpackage 7: Monitoring and assessment of E-Rare non co-funded projects (FCT, Portugal)
The monitoring activities will be expanded beyond the co-funded call. WP 7 focuses on monitoring and assessment of the E-Rare-3 but also running E-Rare-2 non co-funded projects. As for the co-funded call the projects will be monitored using the list of indicators and monitoring tool. The progress reports of these assessments will be presented in the consortium meetings. The evaluation of the E-Rare-2 2011 – 2014 joint calls (end of the projects foreseen for 2018) will help in estimation of the impact of E-Rare-2 funding on rare disease research. The online tool and the already provided yearly reports will be used for the final assessments that will be delivered in a report each year.

Workpackage 8: Strategic research funding policy (ZonMw, The Netherlands)
E-Rare-2 developed a strategic research policy that will be revised in E-Rare-3 in close collaboration with IRDiRC. Several elements will be addressed, i.e. i/ collaboration with the RARE-Bestpractices project on collecting research needs, ii/ organization of two strategic workshops to discuss the type and topics of the non co-funded calls, iii/ sharing data and harmonization, iv/ strengthening collaboration with relevant European Research Infrastructures by mutual exchange of information and best practices with the aim to customize their services to the demand of rare disease researchers, and v/ involvement of patient organizations in funding rare disease research in E-Rare’s joint calls to overcome fragmentation of research and combine scarce resources. In addition, activities beyond E-Rare-3 require exploration of possibilities and/or constraints. The feasibility of scenarios for sustainable activities beyond E-Rare-3 will be therefore discussed.

Workpackage 9: Strengthening colloaboration and enhancing knowledge translation (ISS, Italy)
Strengthening of the communication and interactions between different stakeholders is essential for increasing public awareness to the importance of rare diseases research and its funding. The objective of WP 9 is to strengthen research collaboration and enhance knowledge translation by disseminating the results obtained from the activities in E-Rare-3 through reports and public events. New and adapted tools like the collaboration platform for rare disease researchers RE(ACT), thematic webinars or establishment of a network of E-Rare ambassadors will be implemented to ensure increased awareness and networking. At the end of the E-Rare-3 programme a final strategic meeting will be organized to disseminate the joint activities, achievements and lessons learned to a broad audience. In addition to the above-mentioned networking, E-Rare-3 will seek to establish closer contact with the Innovative Medicines Initiative (IMI) and the European Medicines Agency (EMA) to facilitate the access of researchers to these important stakeholders in drug development.

E-Rare 2012 - Created by Toussaint Biger