News - 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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Events Personal stories
8 April 2025

Stepping into the ring to fight for a special cause

Harry and Finn, two brave young men who have never set foot in a boxing ring before, have signed up to take part in Lily Fight Night this May. They’d never heard of mitochondrial disease or The Lily Foundation before, so ahead of the big fight we asked them why they’re putting their youthful bodies and good looks on the line for a cause they’ve only just discovered.

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.

Research
11 February 2025

Making an IMPACT in the fight against mitochondrial disease

At The Lily Foundation, we understand that true progress in the fight against mitochondrial disease starts with listening to those who live with the condition. That’s why, after the success of our pilot Expert Patient Input Committee (EPIC) last year, we’re excited to announce its evolution into something even bigger and better – introducing IMPACT!