Support for Families & Young People

Lily Foundation supporting families affected by mitochondrial disease

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's Helping Hands

Lily's Helping Hand is a grant scheme designed to make it easier for families affected by mitochondrial disease to afford specialist items that bring daily enrichment to patients’ lives, and which are not routinely provided by the NHS. 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. 

Center Parcs

The Lily Foundation is proud to work in partnership with Center Parcs to offer much-needed short breaks for families who need them most. Breaks are funded by The Lily Foundation and allocated on a first come first serve basis each year. Click here for more information.

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.

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 kindly complete our short online survey so we can inform you about studies that are relevant to you.