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What is a Rare Condition?

There are between 6,000 and 8,000 known rare conditions and around 250 new conditions are discovered each year. Approximately 300,000 people in Scotland will be affected by a rare condition at some point in their lives (in the UK this number comes to 3.5 million whilst across Europe the number of people affected by a rare condition is estimated at 30 million).

Some rare conditions will affect only a handful of people - perhaps only one person in the UK -, whilst others might affect a greater number; for example, it is estimated that 1 in every 2,500 babies born in the UK has cystic fibrosis.

75% of rare conditions affect children and, in any one year, it is estimated that around 10,000 children with rare conditions attend the Royal Hospital for Children in Glasgow.