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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
2 September 2026

New TK2d treatment available through UK early access scheme

A new treatment for TK2d is now available in the UK through the Early Access to Medicines Scheme. Doxecitine-doxribtimine is the first medicine developed specifically to target the underlying cause of TK2d. While not yet fully licensed in the UK, the scheme allows certain patients to access the treatment while it continues through the UK’s licensing process.

Research
5 August 2026

Lily celebrates major investment in future scientists

The Lily Foundation are celebrating a major milestone in mitochondrial research, as a new multi-partner initiative secures funding to drive forward future treatments. As a named partner, we’re proud to be investing directly in five PhD studentships, helping to train the next generation of scientists while ensuring patient voices remain at the heart of groundbreaking research.

Research
17 July 2026

A new approach to developing treatments for rare diseases

Did you know that only around 5% of rare diseases have an approved treatment? Clinical trials are difficult to run when the numbers of patients are so small, so the UK medicines regulator is proposing a new approach for developing and approving treatments for rare diseases like mitochondrial disease. But we need your help to make this change happen! Read on to find out how you can have your say.

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.