Diagnosing rare diseases, treating them, and facilitating access to care when they occur: the EU is lagging far behind and will have to rely on cooperation to make progress on all three fronts, insisted the seven groups in the European Parliament on Wednesday 24 November in plenary.
6,000 rare diseases affecting 30 million citizens have been registered in Europe, many of which are life-threatening, according to the NGO Eurordis, which brings together 984 rare disease patient organisations.