Objectives Print E-mail

The main objective of E-Rare is to maximize the efficiency and impact of research on rare diseases by providing the environment to bring together clinicians and scientists and gather research infrastructure, patient cohorts and related biological material on a European scale.

E-Rare foresees:

  • To coordinate national actions in order to overcome the fragmentation of research on rare diseases and promote interdisciplinary approaches.
  • To harmonize and develop synergies among the national and/or regional research programs of the participating countries.
  • To develop common research policy on rare diseases.
  • To set up sustained and long lasting cooperation between partners.
  • To sustain a favourable competitive position with regard to research on rare diseases in other regions of the globe such as North America and Asia.


E-Rare key stages:

  • Creation of a knowledge base for the development of joint and trans-national activities (survey on national programs, global competitiveness of E-rare, development of a program maker information tool, identification of gaps and overlaps among national research programs and activities on rare diseases).
  • Definition of strategic priorities to be included in the research policy agenda on rare diseases and in future research programs and activities at national, trans-national and European levels.
  • Development of trans-national multidisciplinary approaches (opening and support of rotational positions allowing clinicians to get involved in basic research in the field of rare diseases, networking of technological platforms).
  • Implementation of trans-national cooperation on the use of data management systems and biobanks and on research funding (trans-national calls for proposals).