Being diagnosed with a mitochondrial disease can feel overwhelming, frightening and isolating. Whether you've recently been diagnosed or have been living with the condition for some time, we're here to help.
As awareness and screening services improve, increasing numbers of people are being diagnosed with mito in adulthood. We offer the following support services to adults with mitochondrial diseases:
Confidential helpline
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]
Social networking
The Lily Foundation has launched a private Facebook group for adults in the UK who are affected by the disease. This is a place for you to connect with others who have a diagnosis of mito, share information and experiences, and hopefully make some lasting friendships. You can join via Facebook by clicking here.
Virtual Coffee Mornings
We host virtual 'coffee mornings' and online meet-ups, where people affected by mito can connect with others in their situation in a warm, informal setting. Often these events include Q&A sessions with specialist doctors and other experts working in the field of mitochondrial disease. These events aim to help people with mito feel less isolated and better informed about their condition. For more information please 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.
Patient information days
We work 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.
Young Adult Weekends
These annual two-day events offer young people with mito the chance to enjoy outdoor activities in a safe, disability-friendly environment, with specialist support provided by the Lily team. Feedback from participants has been overwhelmingly positive, with many saying they value the opportunity to try stimulating new activities (including cycling, horse riding and hill treks), and connect with others living with mito. For more information please email [email protected].
Mental Health Support
We offer a specialised mental health service to support young people struggling with the psychological impact of living with a mitochondrial disease. The service provides therapy treatments and advocacy to people aged 14-25 who are affected, including siblings of those with mito. For 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.
Benefits Advice
Click here for a short summary of the benefits available for young people and adults with mitochondrial disease.
If you are a young adult aged 18-25 you may be eligible for additional support services currently available under our Family Support section.
