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News

There’s plenty going on in the world of mitochondrial disease, and you can learn all about our work and read the latest news articles and blogs from across all areas of our charity here.

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Research 4 March 2024

Progress takes time but we’re building momentum

Time is the key to so many discoveries in science, technology, engineering and maths, so it makes a fitting theme for this year’s British Science Week (8th-17th March). We hear from Renata, a bioinformatician who’s recently joined our new Precision Diagnostics project, about how time is playing a key part in both the diagnosis of mitochondrial diseases and the evolution of the technology involved.

Research 29 February 2024

Delving deeper into the diagnostic journey

Did you know there are around three and a half million people in the UK living with a rare disease? But what’s it like getting a diagnosis for, and living with, a disease that few people, even within the medical community, have heard of? These are questions that Dr Stella Johnson from Cardiff University focused on in her recent Masters, and when she needed some help with her study, she knew just where to turn.

Research 22 February 2024

Research review: Vestibular dysfunction

Back in 2020, The Lily Foundation funded a research study that aimed to develop a framework to help identify the cause of balance problems in people with mitochondrial disease. That study is now complete, and the questions in the framework have been shown to accurately rule in or rule out vestibular causes of imbalance and dizziness in mito patients so that they can access appropriate treatment.

Research 26 October 2023

Something EPIC has arrived

Research is the key to finding treatments and an eventual cure for mito, and we believe the real experts are the people living with the disease. That’s why we’re launching a new Expert Patient Input Committee – in short, EPIC: a committee made up entirely of people affected by mito who are willing to share their experiences to help shape research, clinical care and treatments.

Research 12 September 2023

Original approaches in the quest for a cure

The landscape around mitochondrial research is changing all the time as new approaches are considered and new projects undertaken. One such project is a trial using stem cells to treat muscle damage in mitochondrial myopathy patients, and we spoke with Bert Smeets, Professor of Clinical Genomics at Maastricht University, about how this technology could help in mitochondrial care.