Latest news and updates on mitochondrial disease - The Lily Foundation
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News

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.

Personal stories Fundraising
9 August 2026

A lasting legacy for little Ari-Boo

When Pooja and Terry lost their daughter Aria to mitochondrial disease, they channelled their grief into action. What began as a way to honour their little girl’s life has grown into an incredible fundraising team, and one year on from Aria’s passing, they’re raising vital funds, building support networks and helping other families affected by mitochondrial disease to feel less alone.

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.

Awareness
29 July 2026

Celebrities and mitochondrial disease

Mitochondrial disease is a rare and complex condition, but it affects people from all walks of life. While only a few high-profile individuals have publicly shared their diagnosis, many well-known names actively support our cause. Here’s how some familiar faces are making a difference in the fight against mito.

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.