http://www.eurordis.org/IMG/pdf/princeps_document-EN.pdf

A publication of the European Organisation for Rare Diseases (EURORDIS) that addresses the following topics: the concept of disease and rarity, living with a rare disease - same difficulties - different specificities, fight for recognition, from isolation to empowerment of pacients, orphan drugs, neglected diseases, and need for raising public policy and for appropriate public health and professional care.