ABSTRACT
The tale of how rare diseases started to come to public consciousness began more than 30 years ago when Abbey Meyers, who was to become the founder of the National Organization for Rare Disorders (NORD), was concerned about a drug being taken by her oldest son. We need a truly global initiative to foster extended awareness about the incidence, prevalence and scientific importance of rare diseases. During recent Rare Disease Days, national alliances across the globe, on every continent, organised activities that were designed to increase awareness of rare diseases generally. The importance of an international Rare Disease Day cannot be overemphasised. The events that take place on Rare Disease Day help focus attention not just on the patient community with rare diseases, but also on the need for new and better treatments. European Organisation for Rare Diseases (EURODIS) and NORD have created numerous online disease-specific communities.
