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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
7 July 2026

Lily welcomes newest recruit Arantxa as PPIE Manager

The Lily Foundation are delighted to welcome Arantxa as our new Public and Patient Involvement and Engagement (PPIE) Manager. With a background in biomedical science and patient-focused research, Arantxa will help ensure the voices of people living with mitochondrial disease are at the heart of research, including through the LifeArc Centre for Rare Mitochondrial Diseases.

Research
12 June 2026

Driving global progress in mitochondrial disease research at Euromit 2026

Last week, Team Lily joined leading scientists, clinicians, pharmaceutical companies and patient advocates at Euromit 2026 in Angers, France. Held every 3 years, it’s the world’s largest conference dedicated to mitochondrial disease research, and we were excited to attend to highlight the growing role of patient-led organisations in shaping the future of care.

Research Personal stories
8 April 2026

Professor Bobby McFarland among TIME100 Most Influential People in Health 2026

Leading mitochondrial disease expert Professor Bobby McFarland has been recognised in the TIME100 Most Influential People in Health 2026, marking a significant moment not just for his work, but for the entire mitochondrial disease community. We spoke to him about what this accolade means personally, and for the whole community.

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.

Research Personal stories
19 September 2025

Mary’s fight for her sight: bringing about a treatment for LHON

When Mary was diagnosed with LHON in 2022, her world changed overnight. But instead of accepting her fate, she took on a fight that could rewrite the story for many facing this rare form of mitochondrial disease. On LHON Awareness Day, discover how Mary’s determination has paved the way for a new treatment – and renewed hope.