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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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.

Personal stories Fundraising
13 May 2025

Why I made the leap into Lily fundraising

“I couldn’t save my two daughters from mitochondrial disease, but their memory drives me to help others and fight for a brighter future,” writes Sarah Moore, our courageous Corporate Fundraising Manager, who turned heartbreak into hope with a skydiving challenge for The Lily Foundation.

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.