'Rare is common: more than 7000 rare diseases affect around 400 million people worldwide (source: WHO). Sadly, for many of those affected receiving the right treatment at the right time is often not a matter of course. Most of the rare diseases are genetic and present in childhood. 30 % of the children born with a rare condition do not reach the age of 5 years. Delays in diagnosis are often caused by a lack of awareness... At RareCare we aim to be an open information resource for individuals with a rare disease, their families and their care providers.'