Position Papers

EURORDIS has put forward two distinct Position Papers in the area of Rare Disease (RD) research that look at both the rationale underpinning RD research and the key priority areas for the next decade. The two texts are closely intertwined and have been published in a joint document.

EURORDIS Position Papers

Why Research on Rare Diseases? issued in October 2010,  delineates the ethical, social, economic and scientific grounds that rare disease research rests upon. This Posiiton Paper calls for public policy intervention to address shortcomings still to be overcome in this field: short-term investments, the large majority of RDs that lack a research project or a research ‘community’, scattered resources and expertise, scarce research on health economics and in socio-psychological areas.

RD research should not be undertaken in isolation from health research in general as feeding innovation contributes to overall EU competitiveness in a knowledge-based society. Nonetheless, RDs need to be a distinct health research priority. Consequently, substantial budgetary support for RD research should be provided for a number of ethical, social, economic, and scientific reasons.

The EURORDIS policy paper Patients’ Priorities and Needs for Rare Disease Research 2014-2020 (October 2011) builds upon findings and reflections carried out in recent years, providing a robust analysis of the state of the art of rare disease research, and making an overall strategic proposal outlining specific priorities for the medium and long term (up to 10 years).

This comprehensive paper makes reference to research across all rare diseases, encompassing fundamental, clinical, translational, epidemiological, and health/social services research, identifying key priority areas. It also illustrates the instruments and approaches that should underpin rare disease research, emphasising the role of patients as active partners in research, the importance of integrating national, European and international initiatives to pool scarce expertise, and the need for sustainable financial solutions to ensure that successful research is not discontinued. 

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Page created: 23/07/2013
Page last updated: 29/11/2017
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