The 29 February was chosen as the European Day on Rare Diseases since it is a rare day occurring once every 4 years. The motto for the 2008 European Day is "A Rare Day for Very Special People" and the key message focused on the concept of rare diseases as a public health priority. The event was coordinated by the European Organisation on Rare Diseases (EURORDIS), a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.
The purpose of the Day was to:
raise awareness of rare diseases with particular focus on patients’ lives
provide information to patients affected by rare diseases
bolster European collaboration in the fight against rare diseases
raising funds
Rare diseases are also included in the political agenda of European institutions. According to the European Day, the European Commission launched a new version of the website Orphanet, the European information server on rare diseases and orphan drugs providing accurate information and visibility of rare diseases. Information on the epidemiology of the diseases, on their mode of inheritance, and on related genes is also included. Moreover, the Orphanet website provides access to the list of on-going clinical trials and to the orphan indications of a designated molecule.
The Commission is also preparing a European Action Plan in the Field of Rare Diseases for the second semester 2008 accordingly to the results of a public consultation concluded on 14 February 2008.
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