Research Policy and Actions

A disease is considered rare in the European Union (EU) when it affects no more than 1 person in 2 000. Rare diseases are frequently chronically debilitating or even life-threatening. While each rare disease has a low prevalence, the over 6 000 distinct rare diseases identified to date affect or will affect an estimated 30 million people in the European Union.

There is a lack of knowledge, diagnostics, and treatments available for rare diseases. Dedicated funding for rare disease research is limited and coordinated national, European and international research is needed to optimise scarce resources and scattered expertise. In Europe, the 2008 Commission Communication Rare Diseases: Europe's challenges and the 2009 Council Recommendation on an action in the field of rare diseases clearly identify research as a priority. The Council Recommendation states:

The development of research and healthcare infrastructures in the field of rare diseases requires long-lasting projects and therefore an appropriate financial effort to ensure their sustainability in the long term.

EURORDIS actively promotes rare disease research and has developed distinct position papers that delineate the expectations of the rare disease community. EURORDIS participates as partners in a number of consortiums, committees and agencies as well as specific research projects.