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The European research area network – E-Rare

Orphanet Journal of Rare Diseases
Springer (Biomed Central Ltd.)
Publication Date
DOI: 10.1186/1750-1172-5-s1-o15
  • Oral Presentation
  • Medicine


The European research area network – E-Rare ORAL PRESENTATION Open Access The European research area network – E-Rare Sophie Koutouzov From 5th European Conference on Rare Diseases (ECRD 2010) Krakow, Poland. 13-15 May 2010 Rare diseases represent an important public-health issue, affecting 26-30 million persons across Europe, and a major challenge for research. The fragmentation of resources and knowledge for the 6000-8000 rare dis- eases and the lack of efficient treatments for many of them necessitate a coordinated European approach to unravel the underlying molecular defects and pathophy- siological mechanisms. The low number of affected patients requires transnational collaboration with multi- disciplinary approaches to map prevalences, build patient registries, identify biomarkers, develop new diag- nostics and finally perform clinical studies for the devel- opment of treatments. To this end, 8 main European research funding organisations have gathered into the PF6-funded EC ERA-Net on rare diseases (E-Rare) (2006-2010) and developed a number of joint activities regarding systematic exchange of information and best practises, definition of strategic priorities, and, most importantly, joint funding activities through the launch and completion of two fully fledged joint transnational calls for research projects on rare diseases (2007 and 2009). This exemplary joint funding activity has attested the need of, and the acknowledgment from, the research community for transnational funding of collaborative, multidisciplinary and ambitious projects on rare dis- eases. It has leveraged funding for rare disease research in countries that do not have specific programmes for rare diseases and thus enabled the participation of researchers in these countries to transnational projects. A new E-Rare project (E-Rare-2) (2010-2014) aims at deepening and extending the cooperation among the E- Rare-1 and four new partner countries by systematic exchange of information, yearly launched joint calls,

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