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December 2009

Rare diseases: understanding this public health priority

To clarify the concept of rare diseases as a public health issue, Eurordis produced a short document covering all aspects of rare diseases: definition of the concepts involved; characteristics and specificities of rare diseases; statistics; description of the social, medical and financial impact of rare diseases on the lives of patients and their families; need for raising public awareness; need for appropriate funding and for appropriate health systems and professional care; and the absolute necessity to empower patients to emerge from their isolation.
Eurordis encourages rare disease activists to make use of this document, particularly at the national level, in work promoting rare diseases as a public health priority.