The International Network of Paediatric Surveillance Units (INoPSU) – increasing European contribution to the surveillance of rare paediatric disease

Rare diseases and infections are, paradoxically, a numerically important cause of morbidity and mortality in childhood. Individually uncommon, together they number thousands, and many result in very poor outcome prognosis. The difficulty in recognising rare diseases can result in delayed diagnosis, increasing the risk of preventable complications or death, and transmission. Emerging infections will initially be rare and may remain undetected, with the infection spreading extensively before action is taken.