Support for Families & Young People

When a family member is diagnosed with mitochondrial disease it can come as a huge shock. We offer support to help you and your loved ones through the darkest times and beyond.

We can't make your loved one better (yet), but we can break down barriers, provide much-needed information and advice, and connect you to medical specialists and other families in your situation so you don’t feel so isolated.

Someone to talk to

First and foremost we are here to listen. We understand that mitochondrial disease affects people in different ways, and every person living with the condition faces their own unique challenges. We're here to offer emotional support, answer any questions you might have or just listen to your story. To get in touch call confidentially on 0300 400 1234 or 07947 257 247, or email [email protected]

Lily Wish Fund

The Lily Wish Fund is a grant scheme designed to make it easier for families affected by mitochondrial disease to get access to something they might not normally be able to afford to improve their lives. This might be specialist equipment, a home or garden adaptation or even a much-needed short break. Click here to find out more.

Lily Family Weekend

Lily Family Weekend is a unique opportunity for our families to get together and relax in a safe, caring environment. The two-day event includes informative talks and workshops from the UK's top mitochondrial doctors, plus plenty of fun activities to keep children of all ages entertained. Click here for more information.

Patient information days

The Lily Foundation works in partnership with specialist mitochondrial clinics in Newcastle, Oxford and London to co-host a number of patient information days throughout the year. For details about upcoming events visit the events page of the NHS Rare Mitochondrial Disorders Service. 

Social networking

The Lily Foundation has a private Facebook group for families in the UK who are affected by the disease. This is a place for you to connect with others who understand your situation, share information and experiences, and hopefully make some lasting friendships. You can join via Facebook by clicking here.

Virtual Support Meetings

These meetings take place weekly. Families and adults with mito come together over zoom for informal discussions about living with mito. These are a great way for patients to feel connected as part of the wider mito community. If you would like more information please email [email protected].

Clinical trials

We work closely with the UK's top mitochondrial research groups to link patients with new studies and clinical trials, which are critical to furthering understanding of the condition and developing effective treatments. If you'd like to be involved please sign up to The Lily Foundation UK Mito Patient Registry so we can contact you when we are made aware of something you may be able to take part in. 

Family Fund Mobility Support

Family Fund Mobility Support is a programme that helps families raising a disabled or seriously ill child under 3 years old to meet their mobility needs through a car-leasing package for a limited period. The programme is provided by Family Fund and Motability. Learn more and apply.