Latest news and updates on mitochondrial disease - 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
7 July 2026

Lily welcomes newest recruit Arantxa as PPIE Manager

The Lily Foundation are delighted to welcome Arantxa as our new Public and Patient Involvement and Engagement (PPIE) Manager. With a background in biomedical science and patient-focused research, Arantxa will help ensure the voices of people living with mitochondrial disease are at the heart of research, including through the LifeArc Centre for Rare Mitochondrial Diseases.

Personal stories
3 July 2026

Remembering Keira, forever five

To mark Bereaved Parents Day on 3rd July, we spoke with Liz, who lost her firstborn daughter Keira to mitochondrial disease 10 years ago. A decade on, Liz is still learning to live alongside grief – raising her younger daughter Chloe, honouring Keira’s memory and navigating a loss that never truly fades.

Support Events
29 June 2026

Families come together for Lily’s flagship support weekend

Families from across the UK joined the recent Lily Family Support Weekend, bringing together new and familiar faces for two days of connection, learning and fun. With expert-led sessions, engaging activities for children and the introduction of a new interactive Science Festival, the event offered vital support, shared knowledge and a strong sense of community for everyone affected by mitochondrial disease.

Research
12 June 2026

Driving global progress in mitochondrial disease research at Euromit 2026

Last week, Team Lily joined leading scientists, clinicians, pharmaceutical companies and patient advocates at Euromit 2026 in Angers, France. Held every 3 years, it’s the world’s largest conference dedicated to mitochondrial disease research, and we were excited to attend to highlight the growing role of patient-led organisations in shaping the future of care.

Personal stories
8 June 2026

“You never switch off” – caring for someone with mitochondrial disease

Carers Week is a time to recognise the millions of people who quietly, tirelessly care for their loved ones every day – and to shine a light on the challenges they face and the strength they show. For Lucy, caring for her son Harry, who lives with mitochondrial disease, is a role that never stops – but is also filled with love, resilience and moments of joy.