A big frustration during my time as Minister for Rare Diseases was that, despite so much genuine progress, too many rare disease patients today face challenges I recognise from my own experience growing up.
My diagnosis took 30 years. This may seem shocking but it is far from unusual. For the one in 17 people in the UK who will be affected by a rare disease at some point in their lives they can expect to wait an average of four years for a diagnosis.
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