The Lily Foundation Guide to Mitochondrial Disease
Our guide has been created to help newly diagnosed patients understand mitochondrial disease and find support.
Understanding mito
A friendly guide to mitochondrial disease for newly diagnosed families
Hearing the words ‘mitochondrial disease’ for the first time can feel overwhelming. If you’re in the UK and you’ve just received a possible or confirmed diagnosis for you or a loved one, you’re not alone. The Lily Foundation are here to explain the basics in calm, plain English and point you to trusted NHS pathways and other supportive resources.
Below, you’ll find important information to help you understand more about mitochondrial disease. If you want a simple explainer to return to and share with family or your GP, our page on ‘What is mitochondrial disease?’, including a clear video explainer, is a good place to start.
Our ‘Mitochondrial disease glossary’ is there to simplify some of the more complicated terms connected with the condition.
We also take a closer look in more depth at some of the more commonly recognised examples of ‘Mitochondrial syndromes’, plus we’ve included a helpful ‘Q & A about mito disease’ which we hope will answer the more specific queries you may have around the disease.
The Lily Foundation are committed to learning more about the condition and working tirelessly towards finding treatments and, one day, a cure.
What is mitochondrial disease?
Mitochondrial disease resources for newly diagnosed patients: learn more about this rare inherited disorder.
Questions & answers
Do you have a question about mitochondrial disease? You’ll find the answer here.
Mitochondrial syndromes
From Leigh syndrome to LHON: mitochondrial disease syndromes explained plus further support.
Glossary
Our A-Z of everything mitochondrial disease will help you understand this genetic condition.
Drug information
Which drugs are safe to take and which should be avoided if you suffer from mitochondrial disease.
NHS Rare Mitochondrial Disorders Service
We work together to support mitochondrial disease patients from diagnosis to symptoms and beyond.
Mitochondrial donation IVF
A pioneering reproductive option for mitochondrial disease patients championed by The Lily Foundation.
Help your GP get mito aware
Help us to get this mitochondrial disease reference book into every GP surgery.
Mitochondrial reproductive options
Explore reproductive options for those with mito, including ways to reduce the risk of passing it to future children.