EURORDIS - The Voice of Rare Disease Patients in Europe

EURORDIS - The Voice of Rare Disease Patients in Europe

PATIENTS ADVANCING RESEARCH

Patient-driven initiatives and actions to foster rare disease research Rare Disease Day is a great occasion to raise funds for research and care – see what groups in the USA and Spain are doing!

EURORDIS Position on RD Research

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EURORDIS has produced two Position Papers that delineate the ethical, social, economic and scientific grounds that research on rare diseases rests upon.
The EURORDIS position calls for public policy intervention to address the shortcomings still to be overcome in this field: short-term investments, the large majority of RDs lacking 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 happen in isolation from health research in general. By feeding innovation, rare disease research contributes to EU competitiveness in a knowledge-based society. Nonetheless, the EURORDIS Position Papers argue that rare diseases should be a health research priority. Consequently, more substantial budgetary support for RD research should be provided in response to three main imperatives...

document: 

EURORDIS_Rapport_Research_2012.pdf