The Lily Foundation logo featuring a butterfly, hearts and an 'x' for a kiss

Fighting mito,
finding hope.

Group of young adult mito patients holding up their colourful paintings of the lake District Group of young adult mito patients holding up their colourful paintings of the lake District

Support for your patients

Discover all the ways we offer support to patients and their families affected by mito.

There are many ways that we support those affected by mitochondrial disease. if you’ve just diagnosed a patient, please be sure to let them know about all the services we provide.

Private Facebook groups

We have a private Facebook group for adults with the disease, and another for families whose children are affected. They’re a place for people to connect with others who understand their situation, share experiences and make lasting friendships.

Virtual coffee mornings

Mito patients from all over the country can come together over Zoom for a natter in these informal weekly meetings, which are a great way for people to feel less isolated and better informed about their condition.

Lily Wish Fund

This grant scheme is designed to make it easier for patients and families to access something they might not normally be able to afford to improve their lives, such as specialist equipment, a home or garden adaptation or even a short break.

Benefits advice

Our Benefits Advisor Chrissy is here to take the stress out of understanding what benefits mito patients might be entitled to and applying for those benefits.

Family Support Weekend

This residential weekend is a unique opportunity for families to get together and relax, and includes social activities, informative talks and workshops from the UK’s top mitochondrial doctors for adults plus plenty of fun activities to keep little ones entertained.

Why the Lily Family Support Weekend matters

Bobby McFarland is Professor of Paediatric Mitochondrial Medicine and Consultant Paediatric Neurologist at Newcastle NHS Hospitals Foundation, as well as a member of the Lily medical board.

Here he talks about his involvement with The Lily Foundation and in particular the annual Family Support Weekend.

Young Adult Support Weekend

Young people living with mito come together for two days in the Lake District to enjoy outdoor activities in a safe, disability-friendly environment. It’s quality time for patients, accompanying carers and parents to challenge and support each other as well as socialise.

Patient Information Days

In partnership with specialist mitochondrial clinics in Newcastle, Oxford and London, we co-host these occasions which offer an informal atmosphere for visitors to socialise and receive support and information from medical professionals.

Access to medical registries

Registries like the UK Mito Patient Registry are a great way for patients to share details of their condition that can then be used to improve care, guide research and help develop new treatments.

Medical alert cards

We fund medical alert cards for patients, which provide key contact details of a patient’s specialist that can be presented to hospital teams unfamiliar with mito during an emergency admission.

Counselling service

Living with a rare condition like mito can bring as many psychological challenges as physical ones, and that’s why we’re delighted to be partnered with Rareminds to offer a free, confidential online counselling service to individuals and families affected by mito.

Someone to talk to

Everyone’s mito journey is different, and every person living with the condition faces their own challenges. But help is available – whether it’s a specific question, a reassuring chat or some emotional support, we’re here to listen.

Need someone to talk to?

We provide a free counselling service for patients affected by mito in conjunction with Rareminds. Find out more.