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 29 February 2024
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
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.
Research 22 February 2024
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.
Personal stories 4 February 2024
To mark Feeding Tube Awareness Week (4th-10th February) young adult mito patient Danielle tells us how, after years of eating problems and misdiagnoses, the use of a feeding tube has changed her life.
Research 25 January 2024
There’s a lot going on in the world of mitochondrial disease research right now, making it an exciting time in the quest for treatments. And as the amount of ongoing research has grown, so has our team – meet our new Research Manager, Maria
Support 18 January 2024
Living with a rare condition like mitochondrial disease can bring as many psychological challenges as physical ones. That’s why we’re delighted to be teaming up with Rareminds to offer a new free, confidential counselling service to individuals and families who are affected by mito.
Personal stories 4 January 2024
Waistband a bit tight after all the festive indulgence? Why not sign up for a Lily event like our Operations Manager Claire, who’s taking on her biggest fitness challenge yet in 2024 – the London Marathon.
Awareness 22 December 2023
What a year it’s been! As the curtain comes down on 2023, our CEO and Founder, Liz Curtis, takes a moment to reflect on everything that’s happened over the last 12 months, and looks forward to plenty more to come in 2024.
Events 21 December 2023
Tickets are selling fast for next year’s Comedy Night, which got us wondering what it is about this event that makes it so successful. Over the years we’ve seen sell-out show after sell-out show featuring star-studded line ups including Tim Vine, Josh Widdicombe, Alan Davies, Joe Pasquale, Shaun Walsh, Sarah Millican, Marcus Brigstock, Katherine Ryan and many more.
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