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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
30 May 2025

FAQs about the LifeArc Centre for Rare Mitochondrial Diseases

You might have heard us talking about the new LifeArc Centre for Rare Mitochondrial Diseases a lot recently – and for good reason. But what exactly is the centre, and what will this major milestone really mean for patients and families in the search for effective treatments? We’ve answered some of the questions you might have to help explain why it matters so much.

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!