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The Lily Foundation

Impact Report 2024/25

The Lily Foundation is the UK's largest mitochondrial disease charity and Europe's biggest charitable funder of mito research. Their 2024/25 report is a landmark year: the first ever NHS-approved mito treatment, 8 babies born free of disease via mitochondrial donation IVF, and the launch of the £7.5m LifeArc Centre — with the Foundation leading patient involvement across all its work.

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About

Support weekends, online counselling, virtual coffee mornings, Zoom Room webinars, Research Zone, PRIME patient panel, precision medicine diagnostic project

Key Metrics

Key Metric 1 1,500+ families supported; £1.1m donated by supporters
Key Metric 2 230 counselling sessions funded; 85 patients on IMPACT research panel
Key Metric 3 Europe's largest charitable funder of mitochondrial disease research

Key Outcomes

  • First ever NHS-approved treatment for mitochondrial disease (idebenone for Leber's hereditary optic neuropathy)
  • 8 babies born via mitochondrial donation IVF with no signs of mito disease — a landmark breakthrough
  • £7.5m LifeArc Centre for Rare Mitochondrial Diseases launched; 172 diagnostic study participants recruited

Geography

UK-Wide

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