Research Zone. categories: Research on the road,Re… - The Lily Foundation
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finding hope.

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Research Zone

Welcome to The Lily Foundation’s Research Zone, your gateway to the latest breakthroughs, expert insights and cutting-edge developments in mitochondrial disease research.

Advancing mitochondrial disease research is vital for driving progress in understanding, diagnosing and treating this complex condition. The innovative projects and collaborations that are taking place right now are not only advancing science but also bringing hope to the patients and families who are part of our community.

Our hub will bring you the latest news, thought-provoking views and easy-to-understand summaries of ground-breaking studies. Stay connected with the people who are driving advances in mito research and explore how their pioneering work is paving the way towards better treatments and brighter futures, from clinical trials to emerging therapies. Step into a world where the fight against mitochondrial disease is happening every day.

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All Articles Research on the road Researcher spotlight PPIE round-up Science unwrapped Journal club Trials hub

Research on the road
19 May 2026

From London to Cambridge and back again in support of the patient voice

This May, our CEO and Founder, Liz Curtis, and Head of Patient Programmes, Katie Waller, headed out on the road to represent The Lily Foundation at three influential meetings shaping the future of mitochondrial research and care. From London to Cambridge and back again, the message was clear: patient voices don’t belong on the sidelines – they belong in the room.

Research on the road
23 April 2026

What is primary mitochondrial disease and why does it matter?

Last week The Lily Foundation’s Head of Patient Programmes, Katie, joined an international effort alongside clinicians, researchers and patient advocates to define primary mitochondrial disease (PMD). Establishing a consistent definition is crucial in shaping diagnosis, access to care and future research, with ongoing work aimed at building global consensus and improving outcomes for patients and families.

Research on the road PPIE round-up
12 February 2025

Representing the patient voice at the European Neuromuscular Centre meeting

The recent European Neuromuscular Centre (ENMC) meeting united researchers, clinicians and patient advocates to reshape clinical trials and outcome measures for primary mitochondrial myopathies (PMMs). With the patient voice at its core, our Head of Patient Programmes, Katie, reflects on how the meeting’s outcomes could transform care for individuals living with mitochondrial disease.

The Lily Foundation’s Research Zone is your go-to resource for mitochondrial disease news, views and research updates. Connect with the latest developments in genetics, cellular biology and mitochondrial dysfunction to better understand and manage mitochondrial disorders.