Separately, each of these rare illnesses affects only a tiny fraction of the population – by definition, less than five people in 10,000 constitutes a rare disease. It is estimated however that today in the EU, some 5-8,000 rare diseases affect about 30 million Europeans.
With so few patients and case histories per rare disease to draw on, relatively little is known about these diseases in comparison to more common disorders. They’re hard to research, diagnose and treat. And even if a proper diagnosis is made, the treatments are often expensive and difficult.
Every life counts
National health services and research institutes thus face a dilemma: how best to allocate limited resources? Widespread diseases or exceedingly uncommon ones?
One effective response to this dilemma is for countries to pool their resources at EU level. Indeed, by sharing knowledge and expertise the European Commission and the 28 Member States can tackle rare diseases together. The aim is to prevent premature deaths, preserve the patients’ quality of life and reduce the occurrence of these diseases.