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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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Personal stories Awareness
12 May 2025

Spotlight on a mito trailblazer on International Nurses Day

International Nurses Day on May 12th celebrates the vital role nurses play in healthcare – and few embody that more than the UK’s only Mitochondrial Nurse Consultant. Here, Catherine Feeney tells us about her unique role, leading her own specialist clinic and providing expert reproductive advice to families affected by mitochondrial disease.

Awareness
5 May 2025

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.

Personal stories Awareness
21 February 2025

What’s it like to be rare?

Rare Disease Day is on February 28th, a day dedicated to raising awareness about the millions of people worldwide living with a rare disease. To shed light on this important issues, we asked Amy, a young woman living with mitochondrial disease, to tell us what it’s like to be rare.

Research Awareness
19 February 2025

Raising awareness and sharing perspectives

Earlier this month, The Lily Foundation had the privilege of presenting the human side of mitochondrial disease to a group of clinical genetics registrars. Head of Patient Programmes, Katie Waller, teamed up with mito mum Ami to share heartfelt insights and lived experiences to advance understanding of the condition.

Awareness
30 September 2024

Putting mito on the map

A massive thank you to everybody who got involved in this year’s awareness campaign as part of World Mitochondrial Disease Week. A host of activities took place up and down the country thanks to so many of our supporters embracing our mission to put mitochondrial disease on the map.