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Stay connected with the mitochondrial disease community

Discover the latest updates from The Lily Foundation and the wider mitochondrial disease community. You’ll find news, personal stories, research updates and insights into the vital support we provide for those affected by mitochondrial disease.

From inspiring stories of families living with mitochondrial disease to breakthroughs in mito research and much more, there’s plenty going on. Sign up to our newsletters and follow us on social media to stay informed and connected – don’t miss a thing!

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Research Personal stories
3 March 2026

A global search. A local breakthrough

Lizzy has spent years, and tens of thousands of pounds, travelling the world in search of answers to daughter Mathilde’s health problems. Today, that journey has come full circle thanks to our Precision Diagnostics project. Mathilde’s story shows why diagnosis is not just a scientific milestone but a turning point that can transform care and understanding for families living with mitochondrial disease.

Support Awareness
23 February 2026

Rebuilding after a rare disease diagnosis

When 41-year-old Robbie was suddenly diagnosed with mitochondrial disease, his family’s world was turned upside down. Through love, resilience and the support of The Lily Foundation, they’ve found the strength to move forward, even when the path ahead remains unclear. This Rare Disease Day, we want to share Robbie’s story – and the challenges that come with a rare disease diagnosis.

Awareness
21 February 2026

Three and a half million isn’t rare

Did you know that 1 in 17 people live with a rare disease? That’s not actually that rare, so chances are someone you know is affected. We’re on a mission to end the isolation felt by rare disease patients, so as we approach Rare Disease Day on 28th February, join us and help campaign for better care and raised awareness for rare.

Support
6 January 2026

The Lily Foundation unveils first-of-its-kind Guide to Mitochondrial Disease

It takes dedication. It takes insight. It takes countless hours of careful writing, reviewing and refining. And today, we’re incredibly proud to announce a very special resource we believe will make a real difference: The Lily Foundation Guide to Mitochondrial Disease – the first patient-focused resource of its kind in the UK.