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Fighting mito,
finding hope.

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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Support Awareness
23 February 2026

Rebuilding after a rare disease diagnosis

When 41-year-old Robbie was suddenly diagnosed with mitochondrial disease, his family’s world was turned upside down. Through love, resilience and the support of The Lily Foundation, they’ve found the strength to move forward, even when the path ahead remains unclear. This Rare Disease Day, we want to share Robbie’s story – and the challenges that come with a rare disease diagnosis.

Awareness
21 February 2026

Three and a half million isn’t rare

Did you know that 1 in 17 people live with a rare disease? That’s not actually that rare, so chances are someone you know is affected. We’re on a mission to end the isolation felt by rare disease patients, so as we approach Rare Disease Day on 28th February, join us and help campaign for better care and raised awareness for rare.

Awareness
18 December 2025

A year of progress, hope and community – a message from our founder

This past year has brought powerful steps forward for the mito community, from landmark scientific breakthroughs to the incredible efforts of our supporters across the UK. As we take stock of all that’s been achieved, we invite you to read a special message from our Founder and CEO, Liz Curtis, reflecting on the past 12 months and the hope guiding us into 2026.