- One in 17 people will suffer from a rare disease at some point in their lives
- In the UK alone that equates to approximately 3.5 million people
- Only a quarter of rare diseases have had their molecular basis defined, meaning many risk being undiagnosed and therefore untreated
- There are at least 6,000 rare diseases
- 75 per cent of rare diseases affect children
- Many rare diseases (approximately 80 per cent) are of genetic origin
- 30 per cent of rare disease patients dies before their fifth birthday
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