The Lily guide to mito
Helping you understand mitochondrial disease and find the support you need.
Here at The Lily Foundation, we know – some of us first hand – how overwhelming it can be to receive a diagnosis of mitochondrial disease. There’s every chance you’ve never heard of mitochondrial disease before, you might not know anyone else affected and you most likely have a raft of questions you want answered.
That’s why we’ve created our Guide to Mitochondrial Disease. It’s been put together based on feedback from others going through similar experiences, with input from leading medical experts.
What you’ll find inside our guide to mito
- Clear explanations to help you understand mitochondria and mitochondrial disease.
- Simple descriptions of mitochondrial inheritance and diagnosis, supported by helpful analogies.
- Guidance on where to find specialist care and connect with others who understand.
- Words of encouragement from families who’ve walked this path before.
Who is the guide to mitochondrial disease aimed at?
- People living with mitochondrial disease.
- Families, carers and friends.
- Those newly diagnosed or waiting for answers.
- Healthcare professionals wanting a clear, patient-friendly overview.
Our wish is for this guide to offer you some comfort and clarity as you navigate the first steps after your or your loved one’s diagnosis. We hope it helps you feel supported, informed and part of a community that truly understands.
How can I read the guide?
Simply click on the link below to access the digital version. You can read the guide online or download a copy to keep or print at home. If you’d like a physical copy, please ask your specialist centre.
If you’re a medical professional who would like to order copies for your institution, please email [email protected].
Read the guide
Open the digital version of The Lily Foundation Guide to Mitochondrial Disease here. You can read it online or download a pdf copy to keep or print at home.