day international of the disease rarely.
-“Patients and researchers: partners for life!”
-28 February it is the third day of rare diseases.
Paris, February 2010. Around this event, hundreds of groups of patients and partners organize various activities to raise awareness about rare diseases and the 30 million people affected in Europe.
The rare disease day was released and is coordinated by the European Organisation for rare diseases – EURORDIS , a Federation representing more than 400 patient organisations in 42 countries. The campaign involves the national alliances for rare diseases and patient groups in 40 countries, both the EU and the USA, Canada, Argentina, Australia, New Zealand, Japan, China and Taiwan, among others.
The European Union considered a disease as rare when it affects less than 1/2000 citizens. 80% Has a genetic origin and most of the diseases affecting children. Most of rare diseases are serious, chronic and endanger life. Due to their low prevalence, expert doctors are also rare, knowledge is scarce, the provision of assistance is inadequate, research is limited and in very rare cases, there is a cure.
This year the theme focuses on the importance of research into rare diseases. The research represents the hope of millions of rare disease patients for which there is not a cure today. In the last decade, the scientific and medical progress has opened up new opportunities in the field of rare diseases research; rare diseases have made important contributions to research and development of treatments for most common diseases.
The 2010 rare disease day highlights the importance of collaboration between patients and researchers. A recent survey carried out by EURORDIS, among 300 patient organisations and representing more than a million patients in 29 countries, shows that patients are important catalysts of the research
The results of the survey will be presented at the European workshop organised by EURORDIS, 1 March 2010, in Brussels. This event, organized in conjunction with E-RARE ( http://www.e-rare.eu ) in collaboration with the European Commission, Orphanet ( http://www.orpha.net ) and EuroPlan ( http://www.europlanproject.eu ), will succeed in that research into rare diseases should be included in publicly funded projects.
According to the theme of this year, it invites patient organisations to nominate a scientist, who has helped in the progress of the investigation of his illness to the Hall of Fame in investigation of rare diseases (39 nominations so far). Patients on an individual basis may participate in the photo contest and video (more than 300 inscriptions until now) and share your story on Facebook (more than 3360 fans so far and more than 50 who join every day).
More information at: http://www.rarediseaseday.org
