A hidden priority: the paradox of rarity (EURORDIS perspective)

Abstract

Six thousand to nine thousand different rare diseases according to different classifications have been identified to date and new conditions appear each month as reported in the scientific literature. Although each rare disease affects very few people, when all > 6000 diseases are taken collectively, 30 million people are affected in Europe alone. Each rare disease impacts not only the person suffering, but also entire families, communities, and our society as a whole. This is the paradox of rarity we face today.

Keywords::

• European Organisation for Rare Diseases
• National Organization for Rare Diseases
• orphan drugs
• rare diseases