Introducing our newest research recruit

In anticipation of Rare Disease Day, we spoke to our newest research recruit, Jamie, about what first inspired her to work in the field of rare diseases, and why it’s so important for us to keep spreading the word about mitochondrial disease.

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Research review: Vestibular dysfunction

Back in 2020, The Lily Foundation funded a research study aiming to develop a framework to help identify the cause of balance problems in mito patients. That study is now complete, and the questions in the framework have been shown to accurately rule in or out vestibular causes of imbalance …

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The simple device that’s saving lives

Two years ago, 35-year-old Danielle was finally diagnosed with mitochondrial disease, after suffering all kinds of eating problems and enduring a raft of misdiagnoses. 10 years ago she was fitted with a feeding tube, and to mark Feeding Tube Awareness Week she told us how that intervention changed her life.

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See our work in action