EURORDIS Position on Rare Disease Research

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...

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases