Moving ahead with its public awareness campaign targetting scientists and decision-makers in order to promote more and better quality research on rare diseases, EURORDIS, the European federation of rare disease associations, presented a first discussion document at a colloquium on March 1st, 2010 in Brussels. Based on principles of equality, social justice and solidarity, the EURORDIS document emphasized the characteristics of research on rare diseases:
- These diseases have a high impact in terms of suffering and mortality, which requires the development of early diagnosis and better treatment;
- Since it is so innovative, research on these diseases leads to the development of personalized medicine which may in turn benefit more common diseases.
- The creation of European expert centers and networks form a veritable laboratory for the politics of health for tomorrow.
As Yann Le Cam, General Director of EURORDIS emphasizes, only a sustained financial committment at the national and European levels will permit the development of research which is better adapted to the 7000 rare disorders which affect 30 million European patients.
For more information, download the discussion document on EURODIS website: “Why invest in research on rare diseases?” – 11/04/10 (PDF – 11 pages – 264 ko)