For years, families affected by mitochondrial disease have been telling us how difficult it is to find clear, reliable explanations of this complex condition, especially when facing a new diagnosis. Understanding mito takes time, and it takes support. That’s why we set out to create something truly transformative: a guide that makes mitochondrial disease clear, accessible and easy to comprehend for everyone who lives with it.
Created entirely in-house by our team, and developed alongside clinicians and people with lived experience, The Lily Foundation Guide to Mitochondrial Disease breaks down essential information into simple illustrations and plain, compassionate language. It outlines common symptoms and management approaches, explains the science in an approachable way and offers practical advice on navigating healthcare, daily living and the support services available.
Physical copies of the guide will be available for newly diagnosed patients in specialist clinics, but we’ve made a digital, fully accessible version available on our website to be accessed whenever and wherever it’s needed. Families can browse the guide online, download it and even print sections to share with relatives, friends, GPs or anyone involved in their care – because supporting someone with mitochondrial disease takes collaboration.
“People living with mito deserve information that is accurate, understandable and respectful,” said Liz Curtis, The Lily Foundation’s Founder and CEO. “Creating this guide took commitment from our whole team, and we’re incredibly proud of what it offers the community. We hope it helps families feel more confident, informed and empowered.”
As far as we’re aware, nothing like this exists anywhere else in the world. This launch marks a significant step forward in improving understanding and support for people affected by mitochondrial disease in the UK and beyond
For too long, information has been scattered, inconsistent or too technical. The Lily Foundation Guide to Mitochondrial Disease will change that, placing trustworthy, easy-to-use knowledge directly into the hands of those who need it most.