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Lily's story

At the heart of the new Cambridge Children's hospital, a Global Genome Institute will work to improve diagnosis and treatment for even the rarest conditions. Many children and young people with rare diseases have joined Cambridge Children's Network to get involved in how the new hospital will look, feel and care. One of them is Lily. For Rare Disease Day 2022, Lily and her mum Michelle explain what it's like to be a 'rare' family.

Girl in wheelchair with a '13' badge pinned to her blazer