Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure.
Together we’re navigating the complexities of mitochondrial disease; today raising awareness of mito across the globe; tomorrow unlocking the cure through pioneering research; forever supporting the mito community and empowering everyone to make a difference.
What is mitochondrial disease?
Every other day in the UK, a baby is born who may develop serious mitochondrial disease.
Mitochondrial disease, or ‘mito’, is a rare genetic disorder that can affect people in very different ways. Symptoms can start at any age and can involve any organ in the body. There is currently no cure for mitochondrial disease, and in some cases, it can be life-limiting. However, treatments to manage symptoms are available and there is active research taking place globally to find a cure. Thanks to research, we are learning more daily about mitochondrial disease.
Mitochondrial dysfunction has been identified as a key factor in other more common diseases including dementia, Parkinson's disease, epilepsy and cancer. The research we fund and support not only holds promise for individuals affected by mitochondrial disorders, but also has the potential to benefit millions of others.
That’s why, despite being a little-known disease, mito could be the key to some of the most important medical breakthroughs of our time.
In 2024, 80% of patients do not have a genetic diagnosis for mitochondrial disease, and that’s simply not good enough. Without one, there is no chance of finding a cure, being offered treatment or simply being accepted on a clinical trial. And, possibly the hardest thing of all for some, reproductive options are severely limited.
Last year, Millie and Tony lost their beautiful baby boy, Otto, to mitochondrial disease. For Millie, getting a confirmed diagnosis for Otto was incredibly significant, and here she explains why. It’s stories like theirs that make The Lily Foundation determined to change things.
Help us to support parents like Millie and Tony, and improve the lives of everyone affected by mitochondrial disease.
Did you know it’s World Mitochondrial Disease Week from 16th-22nd September? We want to get everyone talking about mitochondrial disease, because getting it in the public eye helps drive research, boost donations and improve clinical services. Wherever you live, there are lots of ways to get involved.
The Lily Foundation are delighted to announce the investment of almost £100k into a pioneering new project by a team of researchers to investigate the effects of three different treatments on mitochondrial diseases.
The Science Museum in London is the home of award-winning, interactive exhibitions, iconic objects and stories of incredible scientific achievement. And now it’s also home to a new display showcasing the history of mitochondrial donation and the role The Lily Foundation played in changing UK law.