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
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.

Personal stories
3 July 2026

Remembering Keira, forever five

To mark Bereaved Parents Day on 3rd July, we spoke with Liz, who lost her firstborn daughter Keira to mitochondrial disease 10 years ago. A decade on, Liz is still learning to live alongside grief – raising her younger daughter Chloe, honouring Keira’s memory and navigating a loss that never truly fades.

Support Events
29 June 2026

Families come together for Lily’s flagship support weekend

Families from across the UK joined the recent Lily Family Support Weekend, bringing together new and familiar faces for two days of connection, learning and fun. With expert-led sessions, engaging activities for children and the introduction of a new interactive Science Festival, the event offered vital support, shared knowledge and a strong sense of community for everyone affected by mitochondrial disease.

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.