Health strategy

Eurordis focused on key objectives and proposals in the area of rare diseases to be included within the new strategic framework to guide the Commission’s future work in the field of Public Health. This contribution pertains to the Commission’s Discussion Document for a Health Strategy, “Health in Europe: A Strategic Approach”.

 

Objectives include consolidating the position of rare diseases as a priority in the political agenda of European decision-makers; fighting the impact of rare diseases on the lives of patients by improving access to diagnosis, information, treatment and care, through exchange of good practices and patient support, and via social and educational services; and promoting basic and clinical research to develop medicinal products and therapies. Proposals include a Commission Communication and Council Recommendations on rare diseases, an EU High Level Group on rare diseases, a Community Agency for Rare Diseases and, for a global approach, an International Coordination for Orphan Drugs and Rare Diseases (ICORD).

 
 
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