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.


The organisational structure of E-Rare is based on 4 pillars: the Network Coordination Unit (CU), The Operating Group (WPLs), the Network Steering Commitee (NSC) and the External Advisory Board (EAB).

Coordination Unit

The coordinattion unit consists of the coordinator, project manager and financial and administrative officer. The CU of E-Rare is based at French National Research Agency (ANR) in Paris, France and includes the following members:

Programme Coordinator: Daria Julkowska

Project manager: Natalia Martin

Communication manager: Juliane Halftermeyer

Financial & administrative officer: Dalar Hamon-Arslanyan

Network Steering Commitee

The Network Steering Commitee consist of one representative from each partner in the consortium (see also Partners section).

Operating Group

The OG is composed of the coordinator, work package leaders, NSC chair and vice chair. The OG not being a decision-making body is advising the Coordinator in the overall management of the consortium.

External Advisory Board

The External Advisory Board is composed of leading scientists in the field of rare diseases and representatives of European organizations important for rare diseases.

E-Rare 2012 - Created by Toussaint Biger